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AN ANZUP CANCER TRIALS GROUP PUBLICATION ISSUE 3 JULY 2015
Conducting clinical trial research to improve treatment of bladder kidney
testicular amp prostate cancer
A little below the belt
2 A LITTLE BELOW THE BELT
DISCOVER THE LATEST IN CUTTING EDGE CLINICAL TRIALS
SUNDAY 12 JULYTHE COMMUNITY ENGAGEMENT FORUM DIRECT FROM THE SOFITEL HOTEL
BOOK YOUR FREE PLACE A N Z U P O R G A U
LIVE COMMENTARY BY WORLD-RENOWNED UROGENITAL amp PROSTATE CANCER EXPERTS
A LITTLE BELOW THE BELT 3
Welcome to the third issue of the ANZUP Cancer Trials Group consumer magazine A Little Below the Belt In this issue exceptional patients share their experience as we explore opportunities available for regional and remote patients to participate in a clinical trial At the same time we examine some of the unique issues those patients face compared with their city counterparts
We also meet Dr Craig Underhill a medical oncologist from Albury-Wodonga Craig is a champion of rural and remote patients driving their agenda and special needs at a local state and national level
We continue to follow the journey taken by our patients and their families as they navigate the health system after a cancer diagnosis We also look at a new ANZUP trial that has just received first round funding The Pain Free TRUS B trial created by Dr Jeremy Grummet aims to reduce the pain and anxiety felt by men undergoing a prostate biopsy Jeremy also outlines his own journey in taking an emerging idea through to a fully developed concept as well as the challenges he faced when his initial request for funding was declined
Colin OrsquoBrien is a prostate cancer survivor and a member of the ANZUP Consumer Advisory Panel He has worked closely with Jeremy in developing the concept from the perspective of the patient Colin explains how he plays devilrsquos advocate on the potential trial by putting himself in the patientrsquos shoes
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 11 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists in urogenital and prostate cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
We also look forward to introducing you to Anne Wallington Anne has been a long-time supporter of ANZUP and runs annually in the City2Sea and other community events in memory of ANZUP CAP Chair Belinda Jagorsquos daughter Bec
Testicular cancer is rarely funny That said we meet Melbourne actor and comedian Daniel Tobias who has managed to put a comedic spin on something that affects too many young Australian men in their prime Daniel was diagnosed with testicular cancer just about the time that girls started to take an interest in him A harrowing regimen of chemo and a subsequent orchiectomy provided the foundation for a hugely successful stage show of which he is both writer and producer The Orchid and the Crow is an hilarious and poignant musical and theatrical exploration of his journey into and out of testicular cancer It sounds an unlikely subject but Danielrsquos show is so successful he is about to do a 26-show season at the Edinburgh Fringe Festival
ANZUP members and supporters work tirelessly to identify new and better treatments for patients affected by testicular prostate kidney and bladder cancer However we know cancer is cruel and despite our very best efforts takes those we love In the past six months ANZUP has said goodbye to two towers of our Consumer Advisory Panel Matthew Carr and Ian Roos OAM We wish to acknowledge their enormous contribution as patient advocates and salute their bravery Rest in peace with our thanks for your courage and support
Without the generosity of our patients their families friends and carers ANZUP would not be able to develop improved treatments We need to hear your stories to help others understand the importance of clinical trial research in making real and substantial changes to patient outcomes Please let us know if you know someone whose story should be told The contact details for ANZUP are just to the left of this story
We wish to thank all our contributors to this issue Their time and commitment is very much appreciated
We hope you enjoy this issue of A Little Below the Belt Donrsquot forget to look out for us online and take a moment to read through the ANZUP website for all the latest news and trial information
03 Welcome
04 Message from the Chair
06 Obituary
07 Message from the CAP Chair
08 Rural health amp overview - Dr Craig Underhill
09 Brian Cooper ENZARAD trial patient
10 Steven Trigwell BCG MMC trial patient
11 From an idea to a trial
12 Daniel Tobias - testicular cancer
15 Telehealth - a revolution in healthcare
18 Fundraising champions
19 Searching for credible health information
20 Current ANZUP trials
26 Current ANZUP innovatons
27 Ask the doctor
28 Below the Belt Pedalthon
Whatrsquos inside
Welcome
ANZUP Cancer Trials GroupLevel 6 Lifehouse Building119-143 Missenden RoadCAMPERDOWN NSW 2050
Twitter ANZUPtrials
Email anzupanzuporgau
Phone +61 2 9562 5033
Locked Bag 77CAMPERDOWN NSW 1450
Graphic design georgiegirldesignsicloudcom
httpwwwanzuporgau
ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group We are here to improve outcomes for people and their families affected by cancers of the urinary system (prostate kidney bladder and testicles) ANZUP is made up of a very diverse range of people involved in the care of these cancers and research into them Collectively our different backgrounds give us an all-around perspective so that we are able to hear and absorb peoplersquos opinions and needs This is very important because we want to ensure that we have a strong understanding of where the needs are what the scientific questions are how to ask and answer those questions and what tools we have as clinicians and researchers to help us get to where we want to be making a real difference for people affected by these cancers
ANZUP is active right across the spectrum of these cancer types not just in the ldquoconventionalrdquo trials of new treatments but also to help support our basic understanding of the cancers the needs of the patients and emerging new technologies and treatments The only way that all of this information can be pulled together meaningfully is through clinical research and clinical trials They are the best tools we have to generate the evidence we need to answer your questions and give the best possible advice and treatment We want to make sure that all the activity in research from test tubes mice and machines all the way through to that different way of doing things to improve treatment ends up giving us useful information But even that is not enough we need to make sure that this information is known understood and applied in clinical practice and healthcare policy
This is a complicated process and it can take a while to get there We and other research groups around the world including others in Australia and New Zealand have already made a lot of progress along these lines but there is always more to be done We rely on the generosity of our members to donate their time to do this work Very few people get rich from a career in research they all have jobs in the Real World We also rely on the generosity of the
4 A LITTLE BELOW THE BELT
people who participate in our clinical trials These people go into a trial knowing that there are no guarantees (even a proven treatment does not work on everyone) but also knowing they will receive the very best care possible and that they are making a difference for those who follow This is altruism at its very best and it is humbling for me to be part of it Our profound thanks to all of you who take part in clinical trials You are our Apollo astronauts leading the way for us all
ANZUP came into existence to conduct clinical trials that canrsquot or wonrsquot be undertaken by pharmaceutical or other companies As we have grown and matured as a group we have been able to take on a range of other functions too One of the areas of which we are most proud is our educational strategy to foster and mentor junior clinicians and researchers to help build them into the leaders of the future These junior clinicians and researchers receive tangible assistance and well-organised education through our various grant systems and activities such as our Annual Scientific Meeting This is already paying off with many of these people now taking leadership roles in ANZUP and elsewhere It has also contributed to a very strong culture of collaboration and cooperation between the various professional disciplines something of a rarity in other parts of the world We are blessed to have such commitment and support from so many individuals and organisations Now thanks to various fundraising initiatives we have the capacity to grow these functions even more as evidenced by several Concept Development Workshops and other programs that started in 2014 and will continue to mature and bear fruit
ANZUP is proud of its strong connections to the broader community We must never lose sight of why we are here To this end we are brilliantly served by our Consumer Advisory Panel which gives advice to ANZUP at all levels Panel members are involved in all our various committees and provide advice to our Scientific Advisory Committee and to the ANZUP Board They ensure our continued relevance they facilitate communication to and from the
ANZUPWho we are amp what we do
Professor Ian Davis presenting at the Concept Development Workshop held in November 2014 with funds provided by the Pedalthon and Mrs Ann Waterford
By the Chair of ANZUP Professor Ian Davis
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 12 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists prostate and other urogenital cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
A LITTLE BELOW THE BELT 5
broader community and many members have a practical role in supporting our research as members of research teams We are confident that we are on the right track strategically and that we can make our trials and the results of our research understandable and relevant
This newsletter is one of the many ways in which we communicate with the broader community Our website is also packed with useful information The ANZUP ClinTrials Refer app is generally available for mobile devices and is a great way to see what trials we are conducting We hold a Community Engagement Forum every year at our Annual Scientific Meeting where we seek to provide more information about cancer in general and genitourinary cancers in particular and try to demystify and clarify the issues around clinical trials We are not complacent however and would love to hear suggestions about how we might improve We would also love to hear your own stories especially if you have been on an ANZUP trial
Once again this edition of the newsletter is packed with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities You will meet some of the researchers and read about some of the challenges particularly for people with cancer who live away from a major centre You will hear about what is involved in taking part in a clinical trial and the sorts of things you might (or might not) expect You will encounter one of our patients who has an entertaining and unique story (as do they all) There is information about our Annual Scientific Meeting to be held in Sydney on 12-14 July 2015 as well as an invitation to the Community Engagement Forum You will also discover more about fundraising activities such as the Pedalthon that are so critical to support the work we do
ANZUP is a not-for-profit charity We fundraise because we must every trial we conduct must find its own financial support our work is not fully covered by the government support we receive through Cancer Australia Research of all types and particularly clinical trials is badly underfunded in Australia and New Zealand We are committed to finding ways to do the trials that need to be done You can help by contributing to our fundraising activities and there is information about how in this newsletter and on the website You can also help by raising awareness of the need for better support for clinical trials and by advocacy for improved research funding Letters and emails are good but donrsquot underestimate the power of a personal visit to your local Member of Parliament They understand that someone who
goes to the trouble of a personal visit is serious They tend to pay attention to that
Cancer has this horrible way of getting personal and taking from us those we love Although we are making great progress and ANZUP and other clinical trials make a real difference there are times we donrsquot get the outcome we want ANZUP and the broader community have lost two giant figures in recent months Matthew Carr was a larger-than-life warrior in every sense of the term and a fantastic supporter of ANZUP through his involvement on the Consumer Advisory Panel Ian Roos was a powerful voice for those with cancer and was instrumental in helping us establish the success of ANZUP We will miss them both We are all better for having known them even if it was for far too short a time
Such loss may be all too familiar to you You are probably reading this because you or someone you love have been touched by cancers such as these You can add so many more names to list sometimes the names of giants sometimes simply the names you quietly hold in your hearts We are here to honour them and we are here to do something about it I am very proud to be a part of it and I am very grateful to all our members - and all of you who are reading this - for the efforts you make to ensure we achieve our goal
Thanks for your interest in ANZUP
Once again this edition of the newsletter is packed
with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities
Professor Ian Davis ANZUP Chair
httpswwwanzuporgau
httpswwwanzuporgau
Every member and friend of ANZUP plays a part in the campaign to eliminate and alleviate the devastating effects of below the belt cancers We are all cognisant that outcomes are at times less than optimal But each day our individual and collective efforts put us one step closer to achieving our high objectives
Just recently one of our own a member of ANZUPrsquos Consumer Advisory Panel passed away as a result of testicular cancer - one of the diseases that is the reason for ANZUPs existence
Matthew Carr Army Major husband and father of two died on 31 January 2015 He was just 38 years old He packed much into those short years with tours in Iraq and Afghanistan as a professional soldier a recently completed Masterrsquos degree and much more But perhaps the standout aspect of Matthewrsquos life was his commitment to ldquohelping the next guyrdquo
From the time of diagnosis of his testicular cancer in his early 20s Matthew became heavily involved in promoting awareness to ensure young men heard the message out
Heartfelt salute to one of our ownMatthew Carr
Obituary
Ian was an academic an advocate an ally and an asset He was a stalwart supporter of ANZUP the broader prostate cancer community and indeed the whole cooperative cancer clinical trials group structure in Australia I vividly remember after we were unsuccessful in our first application to Cancer Australia for funding to set up ANZUP how Ian spent considerable time with me outlining where we could strengthen our application to the point where we were ultimately successful That conversation and many that followed led to our governance structure and in particular our Consumer Advisory Panel subsequently seen by many organisations as a shining example of how community and consumer involvement should work
Ian was never short of an opinion and recognised that not everyone always agreed with him He had a unique and effective style of communication However he was always willing to listen and take a balanced view and I know that I personally always came away from our interactions with a new and broader perspective Ian was awarded the Medal of the
about his disease In 2009 he published his biography Battle Scars which focussed on how he dealt with his cancer He was an impressive and engaging communicator and continued to work tirelessly with ANZUP despite a deteriorating prognosis
There is possibly no better way of expressing his passing than to say that our dear colleague died on active service
Ray Allen Deputy Chair ANZUP Consumer Advisory Panel
Fond farewell to an ANZUP stalwartIan Roos OAM
Order of Australia in 2009 ldquoFor service to the community through raising awareness of mens health issuesrdquo The honour was richly deserved
Ian was a cancer ldquosurvivorrdquo for a long time and sadly we can no longer say it is so The word ldquosurvivorrdquo is such an imperfect one passing through the experience of cancer is about more than simply surviving and in many respects the term can undervalue the memory of those who eventually do not survive the disease ANZUP is grateful to Ian Roos for all he did - for us and the broader cancer community - and we will remember him fondly We are looking at ways to honour Ianrsquos memory in a more enduring fashion and hope to have more information for you soon on this
For now we have a job to do and people to help That is the best way to honour Ian and all the others we serve
Ian Davis Chair ANZUP
6 A LITTLE BELOW THE BELT
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
2 A LITTLE BELOW THE BELT
DISCOVER THE LATEST IN CUTTING EDGE CLINICAL TRIALS
SUNDAY 12 JULYTHE COMMUNITY ENGAGEMENT FORUM DIRECT FROM THE SOFITEL HOTEL
BOOK YOUR FREE PLACE A N Z U P O R G A U
LIVE COMMENTARY BY WORLD-RENOWNED UROGENITAL amp PROSTATE CANCER EXPERTS
A LITTLE BELOW THE BELT 3
Welcome to the third issue of the ANZUP Cancer Trials Group consumer magazine A Little Below the Belt In this issue exceptional patients share their experience as we explore opportunities available for regional and remote patients to participate in a clinical trial At the same time we examine some of the unique issues those patients face compared with their city counterparts
We also meet Dr Craig Underhill a medical oncologist from Albury-Wodonga Craig is a champion of rural and remote patients driving their agenda and special needs at a local state and national level
We continue to follow the journey taken by our patients and their families as they navigate the health system after a cancer diagnosis We also look at a new ANZUP trial that has just received first round funding The Pain Free TRUS B trial created by Dr Jeremy Grummet aims to reduce the pain and anxiety felt by men undergoing a prostate biopsy Jeremy also outlines his own journey in taking an emerging idea through to a fully developed concept as well as the challenges he faced when his initial request for funding was declined
Colin OrsquoBrien is a prostate cancer survivor and a member of the ANZUP Consumer Advisory Panel He has worked closely with Jeremy in developing the concept from the perspective of the patient Colin explains how he plays devilrsquos advocate on the potential trial by putting himself in the patientrsquos shoes
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 11 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists in urogenital and prostate cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
We also look forward to introducing you to Anne Wallington Anne has been a long-time supporter of ANZUP and runs annually in the City2Sea and other community events in memory of ANZUP CAP Chair Belinda Jagorsquos daughter Bec
Testicular cancer is rarely funny That said we meet Melbourne actor and comedian Daniel Tobias who has managed to put a comedic spin on something that affects too many young Australian men in their prime Daniel was diagnosed with testicular cancer just about the time that girls started to take an interest in him A harrowing regimen of chemo and a subsequent orchiectomy provided the foundation for a hugely successful stage show of which he is both writer and producer The Orchid and the Crow is an hilarious and poignant musical and theatrical exploration of his journey into and out of testicular cancer It sounds an unlikely subject but Danielrsquos show is so successful he is about to do a 26-show season at the Edinburgh Fringe Festival
ANZUP members and supporters work tirelessly to identify new and better treatments for patients affected by testicular prostate kidney and bladder cancer However we know cancer is cruel and despite our very best efforts takes those we love In the past six months ANZUP has said goodbye to two towers of our Consumer Advisory Panel Matthew Carr and Ian Roos OAM We wish to acknowledge their enormous contribution as patient advocates and salute their bravery Rest in peace with our thanks for your courage and support
Without the generosity of our patients their families friends and carers ANZUP would not be able to develop improved treatments We need to hear your stories to help others understand the importance of clinical trial research in making real and substantial changes to patient outcomes Please let us know if you know someone whose story should be told The contact details for ANZUP are just to the left of this story
We wish to thank all our contributors to this issue Their time and commitment is very much appreciated
We hope you enjoy this issue of A Little Below the Belt Donrsquot forget to look out for us online and take a moment to read through the ANZUP website for all the latest news and trial information
03 Welcome
04 Message from the Chair
06 Obituary
07 Message from the CAP Chair
08 Rural health amp overview - Dr Craig Underhill
09 Brian Cooper ENZARAD trial patient
10 Steven Trigwell BCG MMC trial patient
11 From an idea to a trial
12 Daniel Tobias - testicular cancer
15 Telehealth - a revolution in healthcare
18 Fundraising champions
19 Searching for credible health information
20 Current ANZUP trials
26 Current ANZUP innovatons
27 Ask the doctor
28 Below the Belt Pedalthon
Whatrsquos inside
Welcome
ANZUP Cancer Trials GroupLevel 6 Lifehouse Building119-143 Missenden RoadCAMPERDOWN NSW 2050
Twitter ANZUPtrials
Email anzupanzuporgau
Phone +61 2 9562 5033
Locked Bag 77CAMPERDOWN NSW 1450
Graphic design georgiegirldesignsicloudcom
httpwwwanzuporgau
ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group We are here to improve outcomes for people and their families affected by cancers of the urinary system (prostate kidney bladder and testicles) ANZUP is made up of a very diverse range of people involved in the care of these cancers and research into them Collectively our different backgrounds give us an all-around perspective so that we are able to hear and absorb peoplersquos opinions and needs This is very important because we want to ensure that we have a strong understanding of where the needs are what the scientific questions are how to ask and answer those questions and what tools we have as clinicians and researchers to help us get to where we want to be making a real difference for people affected by these cancers
ANZUP is active right across the spectrum of these cancer types not just in the ldquoconventionalrdquo trials of new treatments but also to help support our basic understanding of the cancers the needs of the patients and emerging new technologies and treatments The only way that all of this information can be pulled together meaningfully is through clinical research and clinical trials They are the best tools we have to generate the evidence we need to answer your questions and give the best possible advice and treatment We want to make sure that all the activity in research from test tubes mice and machines all the way through to that different way of doing things to improve treatment ends up giving us useful information But even that is not enough we need to make sure that this information is known understood and applied in clinical practice and healthcare policy
This is a complicated process and it can take a while to get there We and other research groups around the world including others in Australia and New Zealand have already made a lot of progress along these lines but there is always more to be done We rely on the generosity of our members to donate their time to do this work Very few people get rich from a career in research they all have jobs in the Real World We also rely on the generosity of the
4 A LITTLE BELOW THE BELT
people who participate in our clinical trials These people go into a trial knowing that there are no guarantees (even a proven treatment does not work on everyone) but also knowing they will receive the very best care possible and that they are making a difference for those who follow This is altruism at its very best and it is humbling for me to be part of it Our profound thanks to all of you who take part in clinical trials You are our Apollo astronauts leading the way for us all
ANZUP came into existence to conduct clinical trials that canrsquot or wonrsquot be undertaken by pharmaceutical or other companies As we have grown and matured as a group we have been able to take on a range of other functions too One of the areas of which we are most proud is our educational strategy to foster and mentor junior clinicians and researchers to help build them into the leaders of the future These junior clinicians and researchers receive tangible assistance and well-organised education through our various grant systems and activities such as our Annual Scientific Meeting This is already paying off with many of these people now taking leadership roles in ANZUP and elsewhere It has also contributed to a very strong culture of collaboration and cooperation between the various professional disciplines something of a rarity in other parts of the world We are blessed to have such commitment and support from so many individuals and organisations Now thanks to various fundraising initiatives we have the capacity to grow these functions even more as evidenced by several Concept Development Workshops and other programs that started in 2014 and will continue to mature and bear fruit
ANZUP is proud of its strong connections to the broader community We must never lose sight of why we are here To this end we are brilliantly served by our Consumer Advisory Panel which gives advice to ANZUP at all levels Panel members are involved in all our various committees and provide advice to our Scientific Advisory Committee and to the ANZUP Board They ensure our continued relevance they facilitate communication to and from the
ANZUPWho we are amp what we do
Professor Ian Davis presenting at the Concept Development Workshop held in November 2014 with funds provided by the Pedalthon and Mrs Ann Waterford
By the Chair of ANZUP Professor Ian Davis
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 12 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists prostate and other urogenital cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
A LITTLE BELOW THE BELT 5
broader community and many members have a practical role in supporting our research as members of research teams We are confident that we are on the right track strategically and that we can make our trials and the results of our research understandable and relevant
This newsletter is one of the many ways in which we communicate with the broader community Our website is also packed with useful information The ANZUP ClinTrials Refer app is generally available for mobile devices and is a great way to see what trials we are conducting We hold a Community Engagement Forum every year at our Annual Scientific Meeting where we seek to provide more information about cancer in general and genitourinary cancers in particular and try to demystify and clarify the issues around clinical trials We are not complacent however and would love to hear suggestions about how we might improve We would also love to hear your own stories especially if you have been on an ANZUP trial
Once again this edition of the newsletter is packed with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities You will meet some of the researchers and read about some of the challenges particularly for people with cancer who live away from a major centre You will hear about what is involved in taking part in a clinical trial and the sorts of things you might (or might not) expect You will encounter one of our patients who has an entertaining and unique story (as do they all) There is information about our Annual Scientific Meeting to be held in Sydney on 12-14 July 2015 as well as an invitation to the Community Engagement Forum You will also discover more about fundraising activities such as the Pedalthon that are so critical to support the work we do
ANZUP is a not-for-profit charity We fundraise because we must every trial we conduct must find its own financial support our work is not fully covered by the government support we receive through Cancer Australia Research of all types and particularly clinical trials is badly underfunded in Australia and New Zealand We are committed to finding ways to do the trials that need to be done You can help by contributing to our fundraising activities and there is information about how in this newsletter and on the website You can also help by raising awareness of the need for better support for clinical trials and by advocacy for improved research funding Letters and emails are good but donrsquot underestimate the power of a personal visit to your local Member of Parliament They understand that someone who
goes to the trouble of a personal visit is serious They tend to pay attention to that
Cancer has this horrible way of getting personal and taking from us those we love Although we are making great progress and ANZUP and other clinical trials make a real difference there are times we donrsquot get the outcome we want ANZUP and the broader community have lost two giant figures in recent months Matthew Carr was a larger-than-life warrior in every sense of the term and a fantastic supporter of ANZUP through his involvement on the Consumer Advisory Panel Ian Roos was a powerful voice for those with cancer and was instrumental in helping us establish the success of ANZUP We will miss them both We are all better for having known them even if it was for far too short a time
Such loss may be all too familiar to you You are probably reading this because you or someone you love have been touched by cancers such as these You can add so many more names to list sometimes the names of giants sometimes simply the names you quietly hold in your hearts We are here to honour them and we are here to do something about it I am very proud to be a part of it and I am very grateful to all our members - and all of you who are reading this - for the efforts you make to ensure we achieve our goal
Thanks for your interest in ANZUP
Once again this edition of the newsletter is packed
with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities
Professor Ian Davis ANZUP Chair
httpswwwanzuporgau
httpswwwanzuporgau
Every member and friend of ANZUP plays a part in the campaign to eliminate and alleviate the devastating effects of below the belt cancers We are all cognisant that outcomes are at times less than optimal But each day our individual and collective efforts put us one step closer to achieving our high objectives
Just recently one of our own a member of ANZUPrsquos Consumer Advisory Panel passed away as a result of testicular cancer - one of the diseases that is the reason for ANZUPs existence
Matthew Carr Army Major husband and father of two died on 31 January 2015 He was just 38 years old He packed much into those short years with tours in Iraq and Afghanistan as a professional soldier a recently completed Masterrsquos degree and much more But perhaps the standout aspect of Matthewrsquos life was his commitment to ldquohelping the next guyrdquo
From the time of diagnosis of his testicular cancer in his early 20s Matthew became heavily involved in promoting awareness to ensure young men heard the message out
Heartfelt salute to one of our ownMatthew Carr
Obituary
Ian was an academic an advocate an ally and an asset He was a stalwart supporter of ANZUP the broader prostate cancer community and indeed the whole cooperative cancer clinical trials group structure in Australia I vividly remember after we were unsuccessful in our first application to Cancer Australia for funding to set up ANZUP how Ian spent considerable time with me outlining where we could strengthen our application to the point where we were ultimately successful That conversation and many that followed led to our governance structure and in particular our Consumer Advisory Panel subsequently seen by many organisations as a shining example of how community and consumer involvement should work
Ian was never short of an opinion and recognised that not everyone always agreed with him He had a unique and effective style of communication However he was always willing to listen and take a balanced view and I know that I personally always came away from our interactions with a new and broader perspective Ian was awarded the Medal of the
about his disease In 2009 he published his biography Battle Scars which focussed on how he dealt with his cancer He was an impressive and engaging communicator and continued to work tirelessly with ANZUP despite a deteriorating prognosis
There is possibly no better way of expressing his passing than to say that our dear colleague died on active service
Ray Allen Deputy Chair ANZUP Consumer Advisory Panel
Fond farewell to an ANZUP stalwartIan Roos OAM
Order of Australia in 2009 ldquoFor service to the community through raising awareness of mens health issuesrdquo The honour was richly deserved
Ian was a cancer ldquosurvivorrdquo for a long time and sadly we can no longer say it is so The word ldquosurvivorrdquo is such an imperfect one passing through the experience of cancer is about more than simply surviving and in many respects the term can undervalue the memory of those who eventually do not survive the disease ANZUP is grateful to Ian Roos for all he did - for us and the broader cancer community - and we will remember him fondly We are looking at ways to honour Ianrsquos memory in a more enduring fashion and hope to have more information for you soon on this
For now we have a job to do and people to help That is the best way to honour Ian and all the others we serve
Ian Davis Chair ANZUP
6 A LITTLE BELOW THE BELT
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 3
Welcome to the third issue of the ANZUP Cancer Trials Group consumer magazine A Little Below the Belt In this issue exceptional patients share their experience as we explore opportunities available for regional and remote patients to participate in a clinical trial At the same time we examine some of the unique issues those patients face compared with their city counterparts
We also meet Dr Craig Underhill a medical oncologist from Albury-Wodonga Craig is a champion of rural and remote patients driving their agenda and special needs at a local state and national level
We continue to follow the journey taken by our patients and their families as they navigate the health system after a cancer diagnosis We also look at a new ANZUP trial that has just received first round funding The Pain Free TRUS B trial created by Dr Jeremy Grummet aims to reduce the pain and anxiety felt by men undergoing a prostate biopsy Jeremy also outlines his own journey in taking an emerging idea through to a fully developed concept as well as the challenges he faced when his initial request for funding was declined
Colin OrsquoBrien is a prostate cancer survivor and a member of the ANZUP Consumer Advisory Panel He has worked closely with Jeremy in developing the concept from the perspective of the patient Colin explains how he plays devilrsquos advocate on the potential trial by putting himself in the patientrsquos shoes
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 11 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists in urogenital and prostate cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
We also look forward to introducing you to Anne Wallington Anne has been a long-time supporter of ANZUP and runs annually in the City2Sea and other community events in memory of ANZUP CAP Chair Belinda Jagorsquos daughter Bec
Testicular cancer is rarely funny That said we meet Melbourne actor and comedian Daniel Tobias who has managed to put a comedic spin on something that affects too many young Australian men in their prime Daniel was diagnosed with testicular cancer just about the time that girls started to take an interest in him A harrowing regimen of chemo and a subsequent orchiectomy provided the foundation for a hugely successful stage show of which he is both writer and producer The Orchid and the Crow is an hilarious and poignant musical and theatrical exploration of his journey into and out of testicular cancer It sounds an unlikely subject but Danielrsquos show is so successful he is about to do a 26-show season at the Edinburgh Fringe Festival
ANZUP members and supporters work tirelessly to identify new and better treatments for patients affected by testicular prostate kidney and bladder cancer However we know cancer is cruel and despite our very best efforts takes those we love In the past six months ANZUP has said goodbye to two towers of our Consumer Advisory Panel Matthew Carr and Ian Roos OAM We wish to acknowledge their enormous contribution as patient advocates and salute their bravery Rest in peace with our thanks for your courage and support
Without the generosity of our patients their families friends and carers ANZUP would not be able to develop improved treatments We need to hear your stories to help others understand the importance of clinical trial research in making real and substantial changes to patient outcomes Please let us know if you know someone whose story should be told The contact details for ANZUP are just to the left of this story
We wish to thank all our contributors to this issue Their time and commitment is very much appreciated
We hope you enjoy this issue of A Little Below the Belt Donrsquot forget to look out for us online and take a moment to read through the ANZUP website for all the latest news and trial information
03 Welcome
04 Message from the Chair
06 Obituary
07 Message from the CAP Chair
08 Rural health amp overview - Dr Craig Underhill
09 Brian Cooper ENZARAD trial patient
10 Steven Trigwell BCG MMC trial patient
11 From an idea to a trial
12 Daniel Tobias - testicular cancer
15 Telehealth - a revolution in healthcare
18 Fundraising champions
19 Searching for credible health information
20 Current ANZUP trials
26 Current ANZUP innovatons
27 Ask the doctor
28 Below the Belt Pedalthon
Whatrsquos inside
Welcome
ANZUP Cancer Trials GroupLevel 6 Lifehouse Building119-143 Missenden RoadCAMPERDOWN NSW 2050
Twitter ANZUPtrials
Email anzupanzuporgau
Phone +61 2 9562 5033
Locked Bag 77CAMPERDOWN NSW 1450
Graphic design georgiegirldesignsicloudcom
httpwwwanzuporgau
ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group We are here to improve outcomes for people and their families affected by cancers of the urinary system (prostate kidney bladder and testicles) ANZUP is made up of a very diverse range of people involved in the care of these cancers and research into them Collectively our different backgrounds give us an all-around perspective so that we are able to hear and absorb peoplersquos opinions and needs This is very important because we want to ensure that we have a strong understanding of where the needs are what the scientific questions are how to ask and answer those questions and what tools we have as clinicians and researchers to help us get to where we want to be making a real difference for people affected by these cancers
ANZUP is active right across the spectrum of these cancer types not just in the ldquoconventionalrdquo trials of new treatments but also to help support our basic understanding of the cancers the needs of the patients and emerging new technologies and treatments The only way that all of this information can be pulled together meaningfully is through clinical research and clinical trials They are the best tools we have to generate the evidence we need to answer your questions and give the best possible advice and treatment We want to make sure that all the activity in research from test tubes mice and machines all the way through to that different way of doing things to improve treatment ends up giving us useful information But even that is not enough we need to make sure that this information is known understood and applied in clinical practice and healthcare policy
This is a complicated process and it can take a while to get there We and other research groups around the world including others in Australia and New Zealand have already made a lot of progress along these lines but there is always more to be done We rely on the generosity of our members to donate their time to do this work Very few people get rich from a career in research they all have jobs in the Real World We also rely on the generosity of the
4 A LITTLE BELOW THE BELT
people who participate in our clinical trials These people go into a trial knowing that there are no guarantees (even a proven treatment does not work on everyone) but also knowing they will receive the very best care possible and that they are making a difference for those who follow This is altruism at its very best and it is humbling for me to be part of it Our profound thanks to all of you who take part in clinical trials You are our Apollo astronauts leading the way for us all
ANZUP came into existence to conduct clinical trials that canrsquot or wonrsquot be undertaken by pharmaceutical or other companies As we have grown and matured as a group we have been able to take on a range of other functions too One of the areas of which we are most proud is our educational strategy to foster and mentor junior clinicians and researchers to help build them into the leaders of the future These junior clinicians and researchers receive tangible assistance and well-organised education through our various grant systems and activities such as our Annual Scientific Meeting This is already paying off with many of these people now taking leadership roles in ANZUP and elsewhere It has also contributed to a very strong culture of collaboration and cooperation between the various professional disciplines something of a rarity in other parts of the world We are blessed to have such commitment and support from so many individuals and organisations Now thanks to various fundraising initiatives we have the capacity to grow these functions even more as evidenced by several Concept Development Workshops and other programs that started in 2014 and will continue to mature and bear fruit
ANZUP is proud of its strong connections to the broader community We must never lose sight of why we are here To this end we are brilliantly served by our Consumer Advisory Panel which gives advice to ANZUP at all levels Panel members are involved in all our various committees and provide advice to our Scientific Advisory Committee and to the ANZUP Board They ensure our continued relevance they facilitate communication to and from the
ANZUPWho we are amp what we do
Professor Ian Davis presenting at the Concept Development Workshop held in November 2014 with funds provided by the Pedalthon and Mrs Ann Waterford
By the Chair of ANZUP Professor Ian Davis
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 12 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists prostate and other urogenital cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
A LITTLE BELOW THE BELT 5
broader community and many members have a practical role in supporting our research as members of research teams We are confident that we are on the right track strategically and that we can make our trials and the results of our research understandable and relevant
This newsletter is one of the many ways in which we communicate with the broader community Our website is also packed with useful information The ANZUP ClinTrials Refer app is generally available for mobile devices and is a great way to see what trials we are conducting We hold a Community Engagement Forum every year at our Annual Scientific Meeting where we seek to provide more information about cancer in general and genitourinary cancers in particular and try to demystify and clarify the issues around clinical trials We are not complacent however and would love to hear suggestions about how we might improve We would also love to hear your own stories especially if you have been on an ANZUP trial
Once again this edition of the newsletter is packed with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities You will meet some of the researchers and read about some of the challenges particularly for people with cancer who live away from a major centre You will hear about what is involved in taking part in a clinical trial and the sorts of things you might (or might not) expect You will encounter one of our patients who has an entertaining and unique story (as do they all) There is information about our Annual Scientific Meeting to be held in Sydney on 12-14 July 2015 as well as an invitation to the Community Engagement Forum You will also discover more about fundraising activities such as the Pedalthon that are so critical to support the work we do
ANZUP is a not-for-profit charity We fundraise because we must every trial we conduct must find its own financial support our work is not fully covered by the government support we receive through Cancer Australia Research of all types and particularly clinical trials is badly underfunded in Australia and New Zealand We are committed to finding ways to do the trials that need to be done You can help by contributing to our fundraising activities and there is information about how in this newsletter and on the website You can also help by raising awareness of the need for better support for clinical trials and by advocacy for improved research funding Letters and emails are good but donrsquot underestimate the power of a personal visit to your local Member of Parliament They understand that someone who
goes to the trouble of a personal visit is serious They tend to pay attention to that
Cancer has this horrible way of getting personal and taking from us those we love Although we are making great progress and ANZUP and other clinical trials make a real difference there are times we donrsquot get the outcome we want ANZUP and the broader community have lost two giant figures in recent months Matthew Carr was a larger-than-life warrior in every sense of the term and a fantastic supporter of ANZUP through his involvement on the Consumer Advisory Panel Ian Roos was a powerful voice for those with cancer and was instrumental in helping us establish the success of ANZUP We will miss them both We are all better for having known them even if it was for far too short a time
Such loss may be all too familiar to you You are probably reading this because you or someone you love have been touched by cancers such as these You can add so many more names to list sometimes the names of giants sometimes simply the names you quietly hold in your hearts We are here to honour them and we are here to do something about it I am very proud to be a part of it and I am very grateful to all our members - and all of you who are reading this - for the efforts you make to ensure we achieve our goal
Thanks for your interest in ANZUP
Once again this edition of the newsletter is packed
with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities
Professor Ian Davis ANZUP Chair
httpswwwanzuporgau
httpswwwanzuporgau
Every member and friend of ANZUP plays a part in the campaign to eliminate and alleviate the devastating effects of below the belt cancers We are all cognisant that outcomes are at times less than optimal But each day our individual and collective efforts put us one step closer to achieving our high objectives
Just recently one of our own a member of ANZUPrsquos Consumer Advisory Panel passed away as a result of testicular cancer - one of the diseases that is the reason for ANZUPs existence
Matthew Carr Army Major husband and father of two died on 31 January 2015 He was just 38 years old He packed much into those short years with tours in Iraq and Afghanistan as a professional soldier a recently completed Masterrsquos degree and much more But perhaps the standout aspect of Matthewrsquos life was his commitment to ldquohelping the next guyrdquo
From the time of diagnosis of his testicular cancer in his early 20s Matthew became heavily involved in promoting awareness to ensure young men heard the message out
Heartfelt salute to one of our ownMatthew Carr
Obituary
Ian was an academic an advocate an ally and an asset He was a stalwart supporter of ANZUP the broader prostate cancer community and indeed the whole cooperative cancer clinical trials group structure in Australia I vividly remember after we were unsuccessful in our first application to Cancer Australia for funding to set up ANZUP how Ian spent considerable time with me outlining where we could strengthen our application to the point where we were ultimately successful That conversation and many that followed led to our governance structure and in particular our Consumer Advisory Panel subsequently seen by many organisations as a shining example of how community and consumer involvement should work
Ian was never short of an opinion and recognised that not everyone always agreed with him He had a unique and effective style of communication However he was always willing to listen and take a balanced view and I know that I personally always came away from our interactions with a new and broader perspective Ian was awarded the Medal of the
about his disease In 2009 he published his biography Battle Scars which focussed on how he dealt with his cancer He was an impressive and engaging communicator and continued to work tirelessly with ANZUP despite a deteriorating prognosis
There is possibly no better way of expressing his passing than to say that our dear colleague died on active service
Ray Allen Deputy Chair ANZUP Consumer Advisory Panel
Fond farewell to an ANZUP stalwartIan Roos OAM
Order of Australia in 2009 ldquoFor service to the community through raising awareness of mens health issuesrdquo The honour was richly deserved
Ian was a cancer ldquosurvivorrdquo for a long time and sadly we can no longer say it is so The word ldquosurvivorrdquo is such an imperfect one passing through the experience of cancer is about more than simply surviving and in many respects the term can undervalue the memory of those who eventually do not survive the disease ANZUP is grateful to Ian Roos for all he did - for us and the broader cancer community - and we will remember him fondly We are looking at ways to honour Ianrsquos memory in a more enduring fashion and hope to have more information for you soon on this
For now we have a job to do and people to help That is the best way to honour Ian and all the others we serve
Ian Davis Chair ANZUP
6 A LITTLE BELOW THE BELT
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group We are here to improve outcomes for people and their families affected by cancers of the urinary system (prostate kidney bladder and testicles) ANZUP is made up of a very diverse range of people involved in the care of these cancers and research into them Collectively our different backgrounds give us an all-around perspective so that we are able to hear and absorb peoplersquos opinions and needs This is very important because we want to ensure that we have a strong understanding of where the needs are what the scientific questions are how to ask and answer those questions and what tools we have as clinicians and researchers to help us get to where we want to be making a real difference for people affected by these cancers
ANZUP is active right across the spectrum of these cancer types not just in the ldquoconventionalrdquo trials of new treatments but also to help support our basic understanding of the cancers the needs of the patients and emerging new technologies and treatments The only way that all of this information can be pulled together meaningfully is through clinical research and clinical trials They are the best tools we have to generate the evidence we need to answer your questions and give the best possible advice and treatment We want to make sure that all the activity in research from test tubes mice and machines all the way through to that different way of doing things to improve treatment ends up giving us useful information But even that is not enough we need to make sure that this information is known understood and applied in clinical practice and healthcare policy
This is a complicated process and it can take a while to get there We and other research groups around the world including others in Australia and New Zealand have already made a lot of progress along these lines but there is always more to be done We rely on the generosity of our members to donate their time to do this work Very few people get rich from a career in research they all have jobs in the Real World We also rely on the generosity of the
4 A LITTLE BELOW THE BELT
people who participate in our clinical trials These people go into a trial knowing that there are no guarantees (even a proven treatment does not work on everyone) but also knowing they will receive the very best care possible and that they are making a difference for those who follow This is altruism at its very best and it is humbling for me to be part of it Our profound thanks to all of you who take part in clinical trials You are our Apollo astronauts leading the way for us all
ANZUP came into existence to conduct clinical trials that canrsquot or wonrsquot be undertaken by pharmaceutical or other companies As we have grown and matured as a group we have been able to take on a range of other functions too One of the areas of which we are most proud is our educational strategy to foster and mentor junior clinicians and researchers to help build them into the leaders of the future These junior clinicians and researchers receive tangible assistance and well-organised education through our various grant systems and activities such as our Annual Scientific Meeting This is already paying off with many of these people now taking leadership roles in ANZUP and elsewhere It has also contributed to a very strong culture of collaboration and cooperation between the various professional disciplines something of a rarity in other parts of the world We are blessed to have such commitment and support from so many individuals and organisations Now thanks to various fundraising initiatives we have the capacity to grow these functions even more as evidenced by several Concept Development Workshops and other programs that started in 2014 and will continue to mature and bear fruit
ANZUP is proud of its strong connections to the broader community We must never lose sight of why we are here To this end we are brilliantly served by our Consumer Advisory Panel which gives advice to ANZUP at all levels Panel members are involved in all our various committees and provide advice to our Scientific Advisory Committee and to the ANZUP Board They ensure our continued relevance they facilitate communication to and from the
ANZUPWho we are amp what we do
Professor Ian Davis presenting at the Concept Development Workshop held in November 2014 with funds provided by the Pedalthon and Mrs Ann Waterford
By the Chair of ANZUP Professor Ian Davis
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 12 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists prostate and other urogenital cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
A LITTLE BELOW THE BELT 5
broader community and many members have a practical role in supporting our research as members of research teams We are confident that we are on the right track strategically and that we can make our trials and the results of our research understandable and relevant
This newsletter is one of the many ways in which we communicate with the broader community Our website is also packed with useful information The ANZUP ClinTrials Refer app is generally available for mobile devices and is a great way to see what trials we are conducting We hold a Community Engagement Forum every year at our Annual Scientific Meeting where we seek to provide more information about cancer in general and genitourinary cancers in particular and try to demystify and clarify the issues around clinical trials We are not complacent however and would love to hear suggestions about how we might improve We would also love to hear your own stories especially if you have been on an ANZUP trial
Once again this edition of the newsletter is packed with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities You will meet some of the researchers and read about some of the challenges particularly for people with cancer who live away from a major centre You will hear about what is involved in taking part in a clinical trial and the sorts of things you might (or might not) expect You will encounter one of our patients who has an entertaining and unique story (as do they all) There is information about our Annual Scientific Meeting to be held in Sydney on 12-14 July 2015 as well as an invitation to the Community Engagement Forum You will also discover more about fundraising activities such as the Pedalthon that are so critical to support the work we do
ANZUP is a not-for-profit charity We fundraise because we must every trial we conduct must find its own financial support our work is not fully covered by the government support we receive through Cancer Australia Research of all types and particularly clinical trials is badly underfunded in Australia and New Zealand We are committed to finding ways to do the trials that need to be done You can help by contributing to our fundraising activities and there is information about how in this newsletter and on the website You can also help by raising awareness of the need for better support for clinical trials and by advocacy for improved research funding Letters and emails are good but donrsquot underestimate the power of a personal visit to your local Member of Parliament They understand that someone who
goes to the trouble of a personal visit is serious They tend to pay attention to that
Cancer has this horrible way of getting personal and taking from us those we love Although we are making great progress and ANZUP and other clinical trials make a real difference there are times we donrsquot get the outcome we want ANZUP and the broader community have lost two giant figures in recent months Matthew Carr was a larger-than-life warrior in every sense of the term and a fantastic supporter of ANZUP through his involvement on the Consumer Advisory Panel Ian Roos was a powerful voice for those with cancer and was instrumental in helping us establish the success of ANZUP We will miss them both We are all better for having known them even if it was for far too short a time
Such loss may be all too familiar to you You are probably reading this because you or someone you love have been touched by cancers such as these You can add so many more names to list sometimes the names of giants sometimes simply the names you quietly hold in your hearts We are here to honour them and we are here to do something about it I am very proud to be a part of it and I am very grateful to all our members - and all of you who are reading this - for the efforts you make to ensure we achieve our goal
Thanks for your interest in ANZUP
Once again this edition of the newsletter is packed
with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities
Professor Ian Davis ANZUP Chair
httpswwwanzuporgau
httpswwwanzuporgau
Every member and friend of ANZUP plays a part in the campaign to eliminate and alleviate the devastating effects of below the belt cancers We are all cognisant that outcomes are at times less than optimal But each day our individual and collective efforts put us one step closer to achieving our high objectives
Just recently one of our own a member of ANZUPrsquos Consumer Advisory Panel passed away as a result of testicular cancer - one of the diseases that is the reason for ANZUPs existence
Matthew Carr Army Major husband and father of two died on 31 January 2015 He was just 38 years old He packed much into those short years with tours in Iraq and Afghanistan as a professional soldier a recently completed Masterrsquos degree and much more But perhaps the standout aspect of Matthewrsquos life was his commitment to ldquohelping the next guyrdquo
From the time of diagnosis of his testicular cancer in his early 20s Matthew became heavily involved in promoting awareness to ensure young men heard the message out
Heartfelt salute to one of our ownMatthew Carr
Obituary
Ian was an academic an advocate an ally and an asset He was a stalwart supporter of ANZUP the broader prostate cancer community and indeed the whole cooperative cancer clinical trials group structure in Australia I vividly remember after we were unsuccessful in our first application to Cancer Australia for funding to set up ANZUP how Ian spent considerable time with me outlining where we could strengthen our application to the point where we were ultimately successful That conversation and many that followed led to our governance structure and in particular our Consumer Advisory Panel subsequently seen by many organisations as a shining example of how community and consumer involvement should work
Ian was never short of an opinion and recognised that not everyone always agreed with him He had a unique and effective style of communication However he was always willing to listen and take a balanced view and I know that I personally always came away from our interactions with a new and broader perspective Ian was awarded the Medal of the
about his disease In 2009 he published his biography Battle Scars which focussed on how he dealt with his cancer He was an impressive and engaging communicator and continued to work tirelessly with ANZUP despite a deteriorating prognosis
There is possibly no better way of expressing his passing than to say that our dear colleague died on active service
Ray Allen Deputy Chair ANZUP Consumer Advisory Panel
Fond farewell to an ANZUP stalwartIan Roos OAM
Order of Australia in 2009 ldquoFor service to the community through raising awareness of mens health issuesrdquo The honour was richly deserved
Ian was a cancer ldquosurvivorrdquo for a long time and sadly we can no longer say it is so The word ldquosurvivorrdquo is such an imperfect one passing through the experience of cancer is about more than simply surviving and in many respects the term can undervalue the memory of those who eventually do not survive the disease ANZUP is grateful to Ian Roos for all he did - for us and the broader cancer community - and we will remember him fondly We are looking at ways to honour Ianrsquos memory in a more enduring fashion and hope to have more information for you soon on this
For now we have a job to do and people to help That is the best way to honour Ian and all the others we serve
Ian Davis Chair ANZUP
6 A LITTLE BELOW THE BELT
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
In July each year ANZUP hosts an Annual Scientific Conference for its members and members of the public A free public forum will be held on Sunday 12 July at the Wentworth Sofitel Sydney from 1pm-4pm World leading specialists prostate and other urogenital cancers will discuss the latest treatments and clinical trials All are welcome to attend and we encourage you to share this information with your family and friends More information can be found on the ANZUP website
A LITTLE BELOW THE BELT 5
broader community and many members have a practical role in supporting our research as members of research teams We are confident that we are on the right track strategically and that we can make our trials and the results of our research understandable and relevant
This newsletter is one of the many ways in which we communicate with the broader community Our website is also packed with useful information The ANZUP ClinTrials Refer app is generally available for mobile devices and is a great way to see what trials we are conducting We hold a Community Engagement Forum every year at our Annual Scientific Meeting where we seek to provide more information about cancer in general and genitourinary cancers in particular and try to demystify and clarify the issues around clinical trials We are not complacent however and would love to hear suggestions about how we might improve We would also love to hear your own stories especially if you have been on an ANZUP trial
Once again this edition of the newsletter is packed with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities You will meet some of the researchers and read about some of the challenges particularly for people with cancer who live away from a major centre You will hear about what is involved in taking part in a clinical trial and the sorts of things you might (or might not) expect You will encounter one of our patients who has an entertaining and unique story (as do they all) There is information about our Annual Scientific Meeting to be held in Sydney on 12-14 July 2015 as well as an invitation to the Community Engagement Forum You will also discover more about fundraising activities such as the Pedalthon that are so critical to support the work we do
ANZUP is a not-for-profit charity We fundraise because we must every trial we conduct must find its own financial support our work is not fully covered by the government support we receive through Cancer Australia Research of all types and particularly clinical trials is badly underfunded in Australia and New Zealand We are committed to finding ways to do the trials that need to be done You can help by contributing to our fundraising activities and there is information about how in this newsletter and on the website You can also help by raising awareness of the need for better support for clinical trials and by advocacy for improved research funding Letters and emails are good but donrsquot underestimate the power of a personal visit to your local Member of Parliament They understand that someone who
goes to the trouble of a personal visit is serious They tend to pay attention to that
Cancer has this horrible way of getting personal and taking from us those we love Although we are making great progress and ANZUP and other clinical trials make a real difference there are times we donrsquot get the outcome we want ANZUP and the broader community have lost two giant figures in recent months Matthew Carr was a larger-than-life warrior in every sense of the term and a fantastic supporter of ANZUP through his involvement on the Consumer Advisory Panel Ian Roos was a powerful voice for those with cancer and was instrumental in helping us establish the success of ANZUP We will miss them both We are all better for having known them even if it was for far too short a time
Such loss may be all too familiar to you You are probably reading this because you or someone you love have been touched by cancers such as these You can add so many more names to list sometimes the names of giants sometimes simply the names you quietly hold in your hearts We are here to honour them and we are here to do something about it I am very proud to be a part of it and I am very grateful to all our members - and all of you who are reading this - for the efforts you make to ensure we achieve our goal
Thanks for your interest in ANZUP
Once again this edition of the newsletter is packed
with information We will take you on a guided tour of our clinical trials including many of our recent successes and upcoming opportunities You will read the personal reflections of one of our Consumer Advisory Panel members and the value of ANZUP and its activities
Professor Ian Davis ANZUP Chair
httpswwwanzuporgau
httpswwwanzuporgau
Every member and friend of ANZUP plays a part in the campaign to eliminate and alleviate the devastating effects of below the belt cancers We are all cognisant that outcomes are at times less than optimal But each day our individual and collective efforts put us one step closer to achieving our high objectives
Just recently one of our own a member of ANZUPrsquos Consumer Advisory Panel passed away as a result of testicular cancer - one of the diseases that is the reason for ANZUPs existence
Matthew Carr Army Major husband and father of two died on 31 January 2015 He was just 38 years old He packed much into those short years with tours in Iraq and Afghanistan as a professional soldier a recently completed Masterrsquos degree and much more But perhaps the standout aspect of Matthewrsquos life was his commitment to ldquohelping the next guyrdquo
From the time of diagnosis of his testicular cancer in his early 20s Matthew became heavily involved in promoting awareness to ensure young men heard the message out
Heartfelt salute to one of our ownMatthew Carr
Obituary
Ian was an academic an advocate an ally and an asset He was a stalwart supporter of ANZUP the broader prostate cancer community and indeed the whole cooperative cancer clinical trials group structure in Australia I vividly remember after we were unsuccessful in our first application to Cancer Australia for funding to set up ANZUP how Ian spent considerable time with me outlining where we could strengthen our application to the point where we were ultimately successful That conversation and many that followed led to our governance structure and in particular our Consumer Advisory Panel subsequently seen by many organisations as a shining example of how community and consumer involvement should work
Ian was never short of an opinion and recognised that not everyone always agreed with him He had a unique and effective style of communication However he was always willing to listen and take a balanced view and I know that I personally always came away from our interactions with a new and broader perspective Ian was awarded the Medal of the
about his disease In 2009 he published his biography Battle Scars which focussed on how he dealt with his cancer He was an impressive and engaging communicator and continued to work tirelessly with ANZUP despite a deteriorating prognosis
There is possibly no better way of expressing his passing than to say that our dear colleague died on active service
Ray Allen Deputy Chair ANZUP Consumer Advisory Panel
Fond farewell to an ANZUP stalwartIan Roos OAM
Order of Australia in 2009 ldquoFor service to the community through raising awareness of mens health issuesrdquo The honour was richly deserved
Ian was a cancer ldquosurvivorrdquo for a long time and sadly we can no longer say it is so The word ldquosurvivorrdquo is such an imperfect one passing through the experience of cancer is about more than simply surviving and in many respects the term can undervalue the memory of those who eventually do not survive the disease ANZUP is grateful to Ian Roos for all he did - for us and the broader cancer community - and we will remember him fondly We are looking at ways to honour Ianrsquos memory in a more enduring fashion and hope to have more information for you soon on this
For now we have a job to do and people to help That is the best way to honour Ian and all the others we serve
Ian Davis Chair ANZUP
6 A LITTLE BELOW THE BELT
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
Every member and friend of ANZUP plays a part in the campaign to eliminate and alleviate the devastating effects of below the belt cancers We are all cognisant that outcomes are at times less than optimal But each day our individual and collective efforts put us one step closer to achieving our high objectives
Just recently one of our own a member of ANZUPrsquos Consumer Advisory Panel passed away as a result of testicular cancer - one of the diseases that is the reason for ANZUPs existence
Matthew Carr Army Major husband and father of two died on 31 January 2015 He was just 38 years old He packed much into those short years with tours in Iraq and Afghanistan as a professional soldier a recently completed Masterrsquos degree and much more But perhaps the standout aspect of Matthewrsquos life was his commitment to ldquohelping the next guyrdquo
From the time of diagnosis of his testicular cancer in his early 20s Matthew became heavily involved in promoting awareness to ensure young men heard the message out
Heartfelt salute to one of our ownMatthew Carr
Obituary
Ian was an academic an advocate an ally and an asset He was a stalwart supporter of ANZUP the broader prostate cancer community and indeed the whole cooperative cancer clinical trials group structure in Australia I vividly remember after we were unsuccessful in our first application to Cancer Australia for funding to set up ANZUP how Ian spent considerable time with me outlining where we could strengthen our application to the point where we were ultimately successful That conversation and many that followed led to our governance structure and in particular our Consumer Advisory Panel subsequently seen by many organisations as a shining example of how community and consumer involvement should work
Ian was never short of an opinion and recognised that not everyone always agreed with him He had a unique and effective style of communication However he was always willing to listen and take a balanced view and I know that I personally always came away from our interactions with a new and broader perspective Ian was awarded the Medal of the
about his disease In 2009 he published his biography Battle Scars which focussed on how he dealt with his cancer He was an impressive and engaging communicator and continued to work tirelessly with ANZUP despite a deteriorating prognosis
There is possibly no better way of expressing his passing than to say that our dear colleague died on active service
Ray Allen Deputy Chair ANZUP Consumer Advisory Panel
Fond farewell to an ANZUP stalwartIan Roos OAM
Order of Australia in 2009 ldquoFor service to the community through raising awareness of mens health issuesrdquo The honour was richly deserved
Ian was a cancer ldquosurvivorrdquo for a long time and sadly we can no longer say it is so The word ldquosurvivorrdquo is such an imperfect one passing through the experience of cancer is about more than simply surviving and in many respects the term can undervalue the memory of those who eventually do not survive the disease ANZUP is grateful to Ian Roos for all he did - for us and the broader cancer community - and we will remember him fondly We are looking at ways to honour Ianrsquos memory in a more enduring fashion and hope to have more information for you soon on this
For now we have a job to do and people to help That is the best way to honour Ian and all the others we serve
Ian Davis Chair ANZUP
6 A LITTLE BELOW THE BELT
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
The ANZUP Consumer Advisory Panel (CAP) is formed from a diverse group of interested clinical trial advocates who bring their personal cancer experience as a patient survivor or carer to the table when asked to review proposed clinical trial concepts from a consumerrsquos point of view
With CAP members living across Australia as well as one in New Zealand we use teleconference to meet three times a year Over a period of about an hour we follow an agenda and discuss items of interest in the urogenital and prostate cancer world with a focus on clinical trial research and whatrsquos happening at ANZUP
We also use teleconference if we are asked to review a particular clinical trial concept or to discuss our participation on ANZUPrsquos disease specific sub-committees
Teleconferencing works well overall and is cost effective for a not-for-profit group such as ANZUP where funding is scarce and needs to be used wisely
But there is nothing like being able to meet face to face We get that opportunity at ANZUPrsquos Annual Scientific meeting (ASM) held in July each year over three days It is a highlight on the CAP calendar and we all look forward to this important event
The networking aspect of the ASM cannot be overlooked It gives us the chance to get to know each other and what we do outside of ldquocancerrdquo Being connected like this helps us understand and appreciate one another for the experience we bring to ANZUP We then feel more comfortable when teleconferencing and believe we communicate more effectively We also get to meet with many of the ANZUP
clinicians and researchers and hear them present their research We walk away with a much better sense of who everyone is and feel more comfortable in expressing to them a consumer point of view when reviewing their research concepts
The best value of all for us is the lsquopre-ASMrsquo Sunday The CAP has the opportunity to participate in a morning education session that covers a range of topics presented by experts in clinical trial research to assist us in being competent consumer advocates The CAP looks forward to this session every year and values highly the learning and discussion that emerges The afternoon is devoted to the ANZUP Community Engagement Forum Leading clinicians and researchers talk about the benefits of clinical trials and provide updates on ANZUP trialsrsquo status while the consumer perspective is presented by a CAP member It is fantastic to see community engagement grow each year given our objective to continue to raise the profile of clinical trials and their importance to the improvement of future patient outcomes
CAP members are then welcome to stay for the two-day scientific program that follows The panel also has the opportunity to present a CAP update in one of the sessions
ANZUP is truly a multi-disciplinary group where you are welcomed and valued for your input At the end of the ASM panel members head home feeling positive they can use their cancer experience for the future benefit of other cancer patients
So roll on July 2015 We have a great program and would love to see you at the Community Engagement Forum
By ANZUP CAP Chair - Belinda Jago
Why personal experience is such a precious commodity
A LITTLE BELOW THE BELT 7
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
8 A LITTLE BELOW THE BELT
Medical Oncologist Dr Craig Underhill has proved a determined and successful advocate for the needs of rural and remote area cancer patients Here he speaks about the importance and benefits of regionally-based clinical trials
as different as chemotherapy is to surgery is to radiotherapy Some of the early trials results are amazing and fill my heart with hope and excitement for the future They donrsquot work for everyone but when they do work they seem to work incredibly well We have much to do to determine issues such as the best way to use these new drugs the best combinations with chemotherapy and other targeted therapies and to understand why some tumours respond and others donrsquot Currently these treatments require intravenous infusions every two or three weeks possibly for a patientrsquos lifetime
All this means we face a small crisis if we keep doing things the same old way We need to ensure all patients are able to access trials of these drugs more easily We need more trials in regional areas When there is proof that new drugs work we need them fast-tracked on to the pharmaceutical scheme We need more support from government and the pharmaceutical industry to expand capacity to do more clinical trials
Unless we work together to achieve all this I fear many current patients will miss out on the opportunity to access potentially life-saving new treatments - with the most serious consequences If you have the ear of your state andor federal politicians why donrsquot you give them a heads-up
I am pleased to introduce this third edition of A little below the belt where we want to highlight that
l Trials are available in a centre that may be closer than a capital city
l As a regional patient you will receive excellent care from a trial
l We acknowledge there are challenges and obstacles that may impact on the decision the patient makes
ANZUP members are acutely aware of the challenges confronting patients in regional areas compared with metropolitan area patients such as travel the cost and complexity of finding accommodation and the need to be away from family and home support We know that receiving care in a regional centre can often be easier and less stressful than needing to travel to metropolitan areas
At every step on your journey you should ask your doctor if a trial is available that is suitable for your situation
ANZUP trial information can also be accessed at wwwanzuporgau
I have been a practising medical oncologist in Albury-Wodonga for 17 years (gosh where did the time go) Before that I worked as a research fellow in London and Melbourne
I was keen to establish a clinical trials unit from the very first time I started practising in Albury-Wodonga Clinical trials are important for a number of reasons Firstly they keep the doctors nurses and other staff up-to-date with new treatments They then learn to use these new treatments under a very controlled environment (by following the ldquoprotocolrdquo) Second they are able to interact with colleagues across Australia and internationally in discussing the design implementation and evaluation of the clinical trials - itrsquos a great way to feel part of a network of health care professionals Third and most importantly it gives patients in regional areas access to new drugs that they otherwise might be deprived
My partners and I established a clinical trials unit back in 1999 and to date many hundreds of patients have been recruited Thanks to connections made through the clinical trials process practising oncology specialists in Albury-Wodonga feel they are part of the greater whole rather than ldquostuck out on a limbrdquo We believe our patients have benefited greatly from access to these trials Without them there would have been no option locally patients would have missed out or been forced to travel to the ldquobig smokerdquo to access a trial
We are very proud of the efforts of the doctors and nurses and administrative assistants who work in our trials unit And we are even more proud of the patients (and families) who decide to take part in trials Sure they might benefit themselves but they also contribute to the future care of other cancer patients
Our trials unit has twice won the NSW Premierrsquos award for clinical trials innovation We enrol patients in national and international studies run by cooperative groups such as ANZGOG and pharmaceutical companies We are part of Cancer Trials Australia based in Melbourne We receive support from many of our patients and families the cancer councils and state governments of NSW and Victoria via the NSW Cancer Institute and The Victorian Cancer Agency There are many people involved in bringing trials to the oncology clinic and there are robust systems in place via various regulatory agencies to ensure care is delivered safely
There has been quite a lot in the media recently about some new approaches to treating cancer - so-called immuno-oncology treatments In some ways this is a new field almost
The journey
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 9
Patients on two separate trials tell of their journey
Itrsquos the three words you never want to hear ldquoYou have cancerrdquo
Just one year to the day from losing my mother to cancer of the oesophagus thatrsquos exactly what my doctor told me
After a routine prostate examination and a follow-up test it was revealed I had prostate cancer More tests followed and after talks with my doctors it was found that the cancer had not progressed outside of the prostate Surgery was the best option It was explained that the operation was a lengthy procedure and it came with its fair share of side effects In the end however it meant the cancer would be completely removed and this suited me
I was given a date for surgery and went about the business of living Fortunately I hadnrsquot suffered any symptoms and apart from knowing in the back of my mind I had cancer life seemed pretty normal Thatrsquos when I was dealt a second blow I suffered a heart attack and was rushed to Orange hospital for immediate surgery The recovery was slow and frustrating but more importantly it also put on hold my impending prostate surgery In the end it was decided that my heart was too damaged and the lengthy surgery would be too much of a risk Given this information the urologist and my heart specialist decided the best course of action would be for me to undergo radiation treatment
Nearly a year after diagnosis I was booked in to start radiation I was advised I would need to spend eight weeks in Orange for the radiation treatment and was asked if I would be interested in partaking in the ANZUP Cancer Trial Grouprsquos Enzalutamide study ENZARAD I decided to be part of the study that would involve taking a course of tablets and hormone implants
The ENZARAD study started about three months before the start of my radiation treatment This involved three or four hour-and-a-half trips from Dubbo to Orange to see Radiation Oncologist Dr Kandeepan Thuraisingam and Alison Coote (trial coordinator) They are supervising me through the study to make sure there are no side effects or other problems and to provide support
To my surprise during this short time my prostate specific antigen level (PSA) had dropped from 88 to 15 That in itself made this study very beneficial With the ongoing support before during and after treatment I am pleased I made the right decision to be involved in the ENZARAD study
I believe we are very fortunate to be able to travel to Orange for treatment and to have the opportunity to be involved in the clinical studies of cancer Before Orange hospital had the radiation machines we would have had to travel to Sydney for treatment This meant seven hours of travel expensive accommodation and possibly frustration at being away from the family for eight weeks it is a long way to travel each weekend I am lucky that I have not had to make the decision of whether or not to go to Sydney for my treatment as it would be a big financial strain and my wellbeing would suffer I also acknowledge that under those circumstances I would not be involved in the ENZARAD study
Treatment and peace of mind have been made much easier by needing to travel only to Orange I can drive down at the start of the week and drive home on weekends to be with my family I am not too far from home I know that if I am needed I can travel home and be back for treatment in a few hours
My radiation treatment started just over two weeks ago At first it was a bit daunting and I had a bit of anxiety about what was to come Fortunately the treatment has not been as bad as I thought it would be It is essentially painless and hasnrsquot caused much discomfort
Dr Kandeepan and Alison Coote have played a large part in putting my worries at ease with their support and helping me deal with my biggest worry ndash accommodation in Orange The Lodge which is just a two-minute walk to the hospital has also been beneficial in helping me meet other people going through the same thing
Would you like to know more about the Enzalutamide studies Please follow this link or call ANZUP on 02 9562 5033
Brian Cooper lives an hour and half from the NSW regional centre of Orange The recently-opened Central West Cancer Centre means Brian can travel closer to home
for treatment rather than the seven-hour trip to Sydney Here Brian shares his story of prostate cancer and his experience as he participates in the ANZUP-led ENZARAD
clinical trial We are grateful to Brian for his time and for sharing his very personal story
Mr Brian Cooper
ANZUP Trials In Action
Regional ANZUP trials in action Patients on two separate trials tell of their journey
The journey
httpanzuporgaucontentaspxpage=trials-prostate
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
10 A LITTLE BELOW THE BELT
We do indeed live in a wide brown land ndash and Western Australia is wider than most
It will take you more than 23 and a half hours to drive the 2239 kilometres from the centre of Broome to the centre of Perth assuming you donrsquot stop ndash not once
To put it in perspective for those in the southern capitals that is further than Adelaide to Brisbane Sydney to Townsville and a tad under the distance from Melbourne to Ayers Rock
Those monumental distances serve to highlight just one of the difficulties involved in living in a remote centre and being diagnosed with a disease that requires ongoing treatment using facilities only available in a state capital
That plus the logistics of finding suitable accommodation for sometimes lengthy treatment regimens and being separated by distance from family and friends
With a typical dyed-in-the-wool country optimism Steven Trigwell reckons he is luckier than most
He has a son in Perth so accommodation isnrsquot so much of a problem and there are air services between Broome and Perth that beat much of the tyranny of distance in around two hours and 40 minutes
But that doesnrsquot stop him worrying about his wife of 33 years Judie how long they will be separated the challenges she faces as recent carer for her mother with dementia ndash and quite how he will react physically to the treatment
Steven 59 has been diagnosed with non-muscle invasive bladder cancer and has a place on an ANZUP clinical trial to assess the efficacy of adding chemotherapy drug mitomycin to the best current treatment with Bacillus of Calmette-Guerin (BCG)
He has been doing it tough of late but to have a laugh with him you wouldnrsquot know it Born in Albany a builder by trade since the age of 15 in his own business since the age of 18 he has lived in Broome for 28 years after stopping for a couple of weekrsquos work ldquo and never leavingrdquo
ldquoYou know how it isrdquo he said
Mr Steven Trigwell
ldquoYou get to a place and it feels right Irsquod had four years in Cairns before the couple of weeks here and I was all ready to go back to Queensland - and it just never happenedrdquo
Steven hasnrsquot been capable of much really physical work in the past three years and that has meant a big draw on the bank account just to keep things ticking over First there was severe and debilitating diverticulitis then his wife had her own health issues and now hellip
Towards the end of last year he started to notice his urine had turned dark
ldquoFirst time Irsquod been at the fishing club and saw it when I went to the toilet I kept an eye on things for a while and didnrsquot see anything
ldquoAfter about a fortnight I was out fishing in the Christmas tinny competition and it happened again so I thought lsquothatrsquos itrsquo best get it checked and went straight to the local GPrdquo
Tests showed he had a growth in his bladder and before he knew it he was on a plane to Perth for a cystoscopy and surgery A follow-up biopsy showed his cancer was non-muscle invasive which made him an ideal candidate for the ANZUP trial
ldquoWe had a phone conference when I got back about the trial and they gave us lots of information about what it might mean and side-effectsrdquo Steven said ldquoThey were great about all thatrdquo
As part of the trial he has been allocated to the second of two groups The first will receive the current standard treatment of direct instillation of BCG into the bladder weekly for six weeks and then monthly for 10 months Participants in Stevenrsquos group will receive BCG and mitomycin weekly for nine weeks and then monthly for nine months
Follow-up assessment will occur for up to five years
Stevenrsquos biggest worry is how the chemo will affect his ability to get to and from home to be with his wife
ldquoUntil we get into it I just donrsquot know how it will go If she needs to she will come to Perth but Irsquom hoping that Irsquoll be ok to go back up after the nine weeks Wersquoll seerdquo
He makes the point that he is lucky to have a son in Perth ldquoThe government allowance for accommodation is $60 a day and if you donrsquot have relatives or friends what do you do Yoursquod struggle to find a motel room for anything like $60 Over time it turns into a lot of money you have to findrdquo
He reserves greatest praise for the medical and nursing staff who have looked after him so far ldquoThe people have made me feel great ndash surgeons nurses They have been so good Always ready to say hello and how are you goingrdquo
Stevenrsquos biggest hope is that the trial treatment sorts out his bladder cancer once and for all
ldquoItrsquos been a while since Irsquove been fishing Itrsquoll be good to get back outrdquo he said
Steven Trigwellrsquos home seems like half a world away from the cancer treatment facilities he so sorely needs Diagnosed with bladder cancer he gives an insight into some of the issues faced by patients from remote regional centres as well as giving thanks for his involvement in an ANZUP trial We say thanks in turn to Steven for sharing his story
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 11
Dr Jeremy GrummetUrologist and ANZUP member
The Green Whistle Trial
Irsquod always been troubled by the pain I had inflicted on men when doing a transrectal prostate biopsy to diagnose prostate cancer Even when you give local anaesthetic it does nothing for the pain of inserting the ultrasound probe - not to mention the anxiety surrounding the whole procedure
And Irsquod heard of too many patients coming back to the clinic years after prostate cancer treatment saying that the worst part of the whole journey was the biopsy
So I jumped at it when a nurse at the day surgery I was working at suggested I try using Penthrox to help ease the pain and anxiety of TRUS biopsy Penthrox is an inhaled painkiller that has been used by paramedics in Australia for years but has only more recently been approved for minor procedures in hospital
I started using Penthrox along with my colleague Prof Mark Frydenberg when we did TRUS biopsies together in Gippsland in regional Victoria Our impression was that it helped and it certainly seemed safe We kept a record of our findings and have since published twice on our clinical experience
But to really test the effectiveness of Penthrox in TRUS biopsy we needed to perform a proper clinical trial ndash a randomised control trial I didnrsquot have the time or expertise to carry out such a feat so I went to ANZUP
ANZUP held a Concept Development Workshop at their annual conference where I pitched my idea to them To my delight they were very receptive We formed a core group of ANZUP researchers to meet and develop a protocol for the trial and eventually applied for competitive funding This all took a lot of work from the team led by the tireless Ian Davis
Unfortunately our first application for a grant failed This was obviously disappointing but the grant reviewers gave us encouraging feedback So we decided to have another crack the following year and this time we got it About $600000 from Cancer Australia and the Prostate Cancer Foundation of Australia to fund a multi-centre randomised control trial around Australia and New Zealand
We were thrilled But now the challenge lies ahead of us to roll this trial out this year and establish if Penthrox can make a real difference to improving the experience of prostate biopsy
The Pain Free TRUS B study has been a labour of love and determination for Melbourne Urologist Dr Jeremy Grummet This trial highlights the challenges faced by ANZUP members in trying to source funding for a ldquogreat ideardquo that will help patients
Colin OrsquoBrien The patients perspective on
The Green Whistle Trial
I first became involved with ANZUP and the CAP some years ago when I was invited to join as a consumer advocate I had been on my own journey with cancer a similar experience to other CAP members
As an active member of a number of other cancer committees I believe it is important to provide a consumer perspective for ANZUP I am very happy to help in whatever way I can to assist other cancer patients practically and pragmatically
The cancer journey is unique to each person diagnosed with the disease These collective experiences are important in helping clinicians when they develop trials to ensure that they are not only relevant but that they also consider the impact upon cancer patients and their families
The journey for patient family and friends will be stressful
CAP members provide important feedback for the development of proposals and during the trial itself In my case I was asked to be the consumer representative in the development of the Penthrox trials for prostate cancer biopsies Reading drafts of the proposal I sometimes felt overwhelmed with the medical and scientific information
But it was a salient and timely reminder that as a consumer representative I had to focus on how the trial would impact upon the consumer the likely benefits and clinical improvements
Importantly what benchmarks can be used to measure clinical outcomes against other procedures I constantly remind myself that I am a consumer not a scientist or clinician and that my role is based on first-hand cancer experience
Can the Penthrox trial encourage more men to step forward more willingly for a biopsy As a former prostate cancer patient there is no doubt in my mind that such a trial and positive outcome will be another step forward in early diagnosis and improved outcomes
CAP education sessions are always very enlightening and helpful focussing on cancer research trends proposed trials and other developments They help educate members about outcomes and successes that may lead to standard cancer diagnosis or treatment
ldquoCancerrdquo is not a word any person wants to hear from their doctor or specialist But as our population ages it is likely to be more common with one in three Australians diagnosed with the disease
The earlier cancer can be detected the greater the chance of survival and a longer fulfilling life
Information education and awareness are the keys to early detection The CAP education sessions are a very important part of this process Greater consumer participation will lead to less fear and avoidance of the word ldquocancerrdquo
Soon to be announced trials
Colin OrsquoBrien is a member of the ANZUP Consumer Advisory Panel (CAP) and is working with Dr Grummet to ensure the trial has patient input into the development of the trial as well as the more practical aspects of being a trial patient
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
12 A LITTLE BELOW THE BELT
He is a soul-searching atheist Jew who found the strength to cheat and beat death with the help of a flawed messiah and a decade later found the inspiration to turn the whole heady mix into a critically acclaimed one-man comedy
Itrsquos understandable if you are doing a double-take
Run that by you again
Meet Daniel Tobias writer actor musician performer comic and the driving force behind The Orchid and The Crow a personal tale of faith and redemption life and love mortality and masculinity in the face of Stage 3 testicular cancer
Nothing is taboo in what might be viewed as one of the more bizarre comedic subject and that includes sex Believe it or not says Daniel ldquogirls donrsquot care that a bloke only has one ballrdquo Girls cared so little in fact that he wrote a song about it
But we are getting ahead of ourselves
Wind back the clock just over a decade to a 20-something Melburnian with a love of performance but no formal training picking up bits and pieces of work small parts in soaps such as Neighbours and Blue Heelers mixed with making music in a couple of bands and taking to the stage in edgier more experimental theatre
Approaching the age of 30 and galvanised by a family trip to Europe ndash in part tracing ancestral roots ndash Daniel challenged a growing frustration that he had to ldquodo somethingrdquo
ldquoThe troublerdquo he says ldquois that I just didnrsquot know how to make it happenrdquo
Thatrsquos when the fates conspired
Daniel had been experiencing some nagging stomach pain and went along to a GP to get it checked out With a forthcoming role in an Adelaide Fringe show he thought he had better be safe than sorry
The diagnosis was somewhat less than accurate and with hindsight tragi-comedic in itself
ldquoHe told me to try some laxativesrdquo
After several nights of festival accommodation - sleeping in a tent in a caravan park ndash it became clear Danielrsquos ldquogastro problemrdquo wasnrsquot going away So it was back to Melbourne and back to the GP who referred Daniel to a specialist
That was the start of a one-year journey to recovery that effectively both saved and changed Danielrsquos life
After a battery of tests there was confirmation of a testicular tumour and surgery to remove it Then confirmation of secondaries in the abdomen neck and chest At just 29 Daniel was a very sick man
His family in search of the best care possible sought out Guy Toner as an expert in the testicular cancer field Daniel was transferred to Guy and underwent intensive chemotherapy and subsequently radiotherapy at the Peter MacCallum Cancer Centre
(Associate Professor Toner Consultant Medical Oncologist at Peter MacCallum and Associate Professor of Medicine at the University of Melbourne is now deputy chair of ANZUP)
It was a year that allowed Daniel to both reflect on his life and his future as well as draw inspiration from the people around him
ldquoNo one prepares you for finding out you are diagnosed with cancerrdquo says Daniel
ldquoApart from great support from family hearing other peoplersquos stories gave me great strengthrdquo
And so to Danielrsquos flawed messiah Lance Edward Armstrong seven times Tour-de-France winner testicular cancer survivor founder of the Lance Armstrong Foundation cancer support group ndash and subsequent self-confessed drug-cheat
Have you heard the one about the bloke who learned he had cancer lost a testicle beat off secondaries and turned the whole episode into a life-changing example of how
art really can imitate life You are about to
The journey
Daniel puts a comedy spin on a tale of faith and survival
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 13
At the time Daniel stumbled upon Armstrong he was of course still the doyen of the cycling fraternity and a true hero to the millions of cycling race fans around the world
The name meant little to Daniel until the day after his tumour was diagnosed and a nurse told him about Armstrongrsquos inspiring story of recovery from Stage 3
ldquoI got his book that night At the time I needed the Lance Armstrong story His story was so palpable Remember that was the year everyone started wearing the Lance Armstrong wristbands Here was someone who had it all ndash it was a feel good storyrdquo says Daniel
ldquoYes he has turned out to be a liar and a cheat when it comes to his racing but there is still some empathy in his cancer story for people who do use faith to get through
ldquoYes he was my messiah figure and despite what has happened there is no denial of that
ldquoThere are plenty of other flawed heroes For example the composer Wagner was an anti-Semite but that doesnrsquot stop many of us appreciating his music
ldquoLance Armstrongrsquos story is fascinating and complex and you have seen how his story has raised awareness of cancer treatment and recoveryrdquo
The motivation to raise awareness burned brightly in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
We may have had the show years earlier but for Danielrsquos admission he ran a mile from his story after a press report turned a cancer-awareness venture into a celebrity grab about a soap star with testicular cancer
ldquoShortly after my treatment I was working with an lsquo80s tribute band I had worked with on and off previously Peter MacCallum asked if the band could play A publicist asked if I would do an interview to raise awareness of the OnTRAC at Peter Mac (adolescent cancer) program
ldquoI felt I had nothing to hide and was really candid in the interview and wanted to help in making people aware about OnTRAC But it turned into a celeb piece about a soap star and cancer which was ridiculous Irsquod only appeared in Neighbours a couple of times in small parts
ldquoIt made me feel I wasnrsquot in control of telling my story I wasnrsquot interested at all in being famous It made me feel really strange
ldquoI am grateful in a way because it made me learn what I want to do on stagerdquo
Audiences around the world are grateful too because that ldquorunning a milerdquo led to Danielrsquos involvement with
performance colleague Clare Bartholomew to deliver the creative force behind the award-winning German punk parody rock act Die Roten Punkte
Daniel had worked on an off with Clare before his diagnosis and says he ldquopestered herrdquo into working with him again once he had worked out the direction he wanted to go
Since 2007 the group has appeared in Australia New Zealand Europe and the UK and North America and until The Orchid and The Crow Daniel and Clare had been more or less constantly on the road
The first performance of the new show in Melbourne in February was the culmination of about two-yearrsquos work that started with an intensive taped interview process about Danielrsquos experiences Hours of transcript were edited to deliver around an hour of material
ldquoThen I saw shows where things switched from stand-up to song and dance and saw there was a way to put together a narrative in the most interesting way possible The show is theatre cabaret and stand uprdquo says Daniel
There is music by Daniel Clare Jherek Bischoff and John Thorn working alongside Casey Bennetto David Quirk and Christian Leavesly
Lance Armstrong makes an ldquoappearancerdquo of course Danielrsquos messianic foil to an apparently angry God unhappy with this atheist Jew pursuing a secular artistic lifestyle ndash so unhappy that he gives him Stage 3 cancer
The path to recovery and redemption highlights the fickle nature of life and the hand it deals us all
ldquoItrsquos not so much a show about cancer but about faith Itrsquos not dark It can be raw but itrsquos a bit of a romprdquo says Daniel
That romp includes confronting the issue of sex and masculinity challenging assumptions about sexual function after the removal of a testicle Hence the song Girls Donrsquot Care Guy Toner liked the song so much he wants it released to help support the work of raising cancer awareness
Daniel is full of admiration for Guy and ANZUP its research work and cancer support and is determined to use the show to further raise awareness about the battle to improve treatment and outcomes
The run in Melbourne now complete the show is destined for venues in Canada then the Edinburgh Festival before returning to Australia and another season in Melbourne and a run in Sydney After that and subject to funding assistance there are hopes for a regional tour and other capital cities
Finally the story behind the title for the less medically conversant
The Orchid says Daniel is a reference to Orchiectomy ndash removal of the testicle
The Crow is a symbol of death
His show just goes to show that you can beat both with great treatment self-belief resilience - and a whole lot of humour
The motivation to raise awareness burned brightly
in Danielrsquos push to bring his own story to the stage 10 years after his treatment and co-incidental with a 10-year check showing he is indeed cancer free
Daniel Tobias
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
14 A LITTLE BELOW THE BELT
bull TESTICULAR bull PROSTATE bull BLADDER bull KIDNEY bull
FIGHT CANCERBELOW THE BELT
Share your story with us here anzupanzuporgau Create awareness and let others know that they are not alone
DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 15
Video consults for distant patients offer many advantages for those who live long distances from their specialists This article is written by Nick Brook and Rajiv Singal and covers many of the issues for this exciting development in healthcare
What is Video Telehealth
There is nothing clever about Telehealth and it is remarkable that uptake has been so slow The technology as voice-over-internet protocol (VOIP) has been available for a long time - Skype was released 11 years ago Telehealth simply uses similar or identical technology to link doctors and other health professionals to patients Travel for remote patients and associated costs are reduced and in urgent settings Telehealth can provide rapid access to expert medical opinion
What are the advantages in big countries such as Australia and Canada
Australia is a big place the sixth largest country after Russia Canada China the USA and Brazil Its land size is 7692024 km2 with a small population (245million) Eleven per cent of the population is classified as living in remotecountryrural areas Canada shares the same challenges as Australia with a similar population spread out over an even greater area
Associate Professor Nick Brook is a Urologist based at the University of Adelaide and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital
Primarily this disparity relates to the practicalities and economics of provision of comprehensive health care in remote areas and is by no means unique to Australia South Australia is a stand out example of how and why Telehealth can help distant patients SA has a population of only 167m The Australian Bureau of Statistics give the following figures for population distribution
SA has traditionally had a close relationship with the Northern Territory in terms of health care provision and many patients travel to Adelaide from the NT for secondary and tertiary care You can see that travel distances involved for some patients are huge Much of the care provided must by its nature be delivered at metropolitan centres but much work up and follow up could be performed by Telehealth reducing costs (economic and social) for patients and government
As an example a typical series of encounters for a prostate cancer patient from GP referral to surgery is as follows
l Initial consult l Biopsy appointmentl Biopsy results l CTMRIBone scan (often canrsquot be arranged at the same visit) l Appointment for results l Second clinic for decision l Pre-anaesthetic clinic l Day of surgery
Telehealth - a revolution in health care
There is a marked disparity in health provision between urban and remote areas of Australia
Major Cities Inner regional Outer regional Remote Very remote 727 12 115 29 09
South Australia
Nick Brook with Dr Rajiv Singal has granted permission for this article to be reproduced It appeared on Associate Professor Brooks blog wwwnickbrookurogologycom
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
16 A LITTLE BELOW THE BELT
Those highlighted in orange could possibly be replaced with Telehealth appointments The potential advantages become crystal clear when we consider that some patients make a 2000 km round trip for a hospital appointment
As well as distant patients there are potential advantages for Residential Aged Care Facility (RACF) residents and Medicare Australia has made special allowances for Telehealth to such patients
It similarly follows that after surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent and monitoring of blood work is the main task Another good fit for urology would be stone follow up for patients on surveillance programs for renal calculi
Are there any disadvantages to Telehealth
Inherent in electronic communication is the inability to make physical contact with patients Nothing can replace an in-person consultation for building the patient-doctor relationship and establishing trust A handshake is the foundation of consultation and the ability to examine is lacking If a patient-end doctor is present this can be circumvented to some extent but the quality of interaction is less Nevertheless it is clear that patients are generally grateful for email access with their treating physicians A robust Telehealth service would potentially improve upon that
Co-ordination of appointments can be challenging as there should be a health-care provider at the patient end Patients may still need to travel large distances to get to a health care provider with Telehealth facilities
Electronic communications can break down although this is rare More important are potential security issues which are discussed below
Why has it taken so long to get this going
This is difficult to answer Perhaps established patterns of behaviour are hard to break as medics we have become wedded to the in-person consultation Clearly advantages and disadvantages of both in-person and Telehealth consults need to be weighed carefully for individual patients
Set-up costs are minimal and most specialist and GP practices will have easy access to the readily available technology
Although government has been leading the Telehealth drive patient demand is increasingly a factor in health care policy but ruralcountrydistant patients may be the least vocal in terms of health care requirements despite often having the greatest need
Financial Incentivesreimbursements for Doctors
Various financial incentives are in place from Medicare Australia through the Medicare Benefits Schedule with the aim of driving Telehealth uptake These are categorised as follows
l Telehealth On-Board Incentivel Telehealth Service Incentivesl Telehealth Bulk Billing Incentivesl RACF On-Board Incentivel RACF Hosting Service Incentives
These taper over time and more information can be found at httpwwwmbsonlinegovauinternetmbsonlinepublishingnsfContentconnectinghealthservices-Program20Overview
Interestingly rebates for Telehealth are actually higher than for in-person consultations and this is said (by Medicare) to reflect the infrastructure costs involved
Systems in use
There is a range of complexity in Telehealth technology At the top end very fast connections (where available) combined with fully integrated complex software and hardware allow monitoring of medical information from skin eyes ears pharynx heart lungs and other parts of body Advanced telemedicine can also manage ECG spirometry dermatoscopy pharyngoscopy and endoscopy sessions
Less complex and costly are installed systems which essentially build on business teleconferencing platforms Digital quality is high and this standard is needed if there is need for diagnosis beyond history-taking These systems still require substantial investment and on-going cost
The easiest to install run and pay for are widely utilised software programs such as Skype and Facetime Most computerised practices will be able to set these up easily and most health care providers are conversant in their use so no additional training is required Quality can be low and these systems are only really suitable for communication based on discussion and history-taking For example clinical signs cannot be reliably demonstrated However on the principle of lsquothe greatest good for the greatest numberrsquo this method of Telehealth probably will have the greatest uptake
Security issues
Just as in a standard face-to-face consultation privacy (and digital security) must be absolutely respected Medical records made at the time of video consultation are recorded and stored in exactly the same way as a standard consultation
After surgery and the initial recovery phase many traditional post operative visits could be conducted electronically particularly when a stable situation is apparent Nick Brook
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 17
In summary it is highly unlikely (although theoretically possible) that a Telehealth consultation could be breached but the risk is probably no greater than the risk of standard computerised medical records being breached by a lsquoprofessionalrsquo and determined hacker It is the health care providerrsquos responsibility to ensure the privacy and security of the consultation that the technical system is reliable secure and fit for clinical purpose and that risk management protocols are in place
The foreseeable future
Increased utilisation of Telehealth may be one of the strategies to help address the huge and unprecedented growth in health care need which is forecast to continue
The tables below are taken from the MBS Telehealth Statistics
The first demonstrates a steep uptake of Telehealth since 2011 but perhaps a developing plateau which would be typical of saturation of the technology-savvy medics Hopefully over time the service will expand further but this will rely on patient acceptance and satisfactory feedback
Services by year and quarter - claims processed as at 31 March 2014
The second table shows claims processed by specialty and it is encouraging to see urology near the top Further expansion in our specialty will be partly patient driven but also requires support from specialty bodies
Year Quarter Services
Subspecialty Providers
Summary
Essentially the aim of Telehealth is to improve access to health care for patients who are disadvantaged by their location itrsquos all about taking health care delivery in the direction where we can better scale the doctor to patient time
Nick Brook is an Associate Professor in Surgery at the University of Adelaide and Consultant Urologist and Director of Urological Cancer at the Royal Adelaide Hospital in South Australia You can follow Nick on Twitter Rajiv Singal leads the Surgical Robotics Program (jointly run by Toronto East General Hospital and Sunnybrook Health Sciences Centre) and is an Assistant Professor in the Department of Surgery at the University of Toronto He supervises the Clinical Endourology Fellowship program at TEGH under the umbrella of the University of Toronto
You can follow him on Twitter
2011 July-September 1809 October-December 52202012 January-March 6096 April-June 12937 July-September 16524 October-December 191112013 January-March 15398 April-June 20300 July-September 22610 October-December 241082014 January-March 25489 Total 169602
Obstetrics amp Gynaecology 79Orthopaedic surgery 131Urology 120ENT 65Anaesthetics 182Psychiatry 519Dermatology 138Cardiology 195Endocrinology 144Gastroenterology 167Neurology 124Paediatric medicine 271Rheumatology 110Thoracic medicine 152
nickbrookMD
DrRKSingal
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
Running to keep fit was the furthest thing from Anne Wallingtonrsquos mind as she followed the black line up and down the swimming pool lap by lap on her exercise routine of choiceAn injury changed all that Forced from the pool for a period of recovery Anne knew she had to find an alternative to keep fit So she started to jog Then she started to run Then she started to run furtherNow she runs half MarathonsldquoI was a swimmer I didnrsquot run Then I couldnrsquot swim for a while so took up jogging Then I started to push myself and began runningrdquo Anne said
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its jobAnne head of senior school at Methodist Ladiesrsquo College Melbourne uses the vehicle of annual charity fun runs to help raise money for ANZUP as part of the Becrsquos Troops fund-raising teamBecrsquos Troops was formed by Belinda Jago whose daughter Bec succumbed to kidney cancer at the age of 19 Belinda is currently chair of the ANZUP Consumer Advisory Panel
How one personrsquos commitment has helped raise funds and awareness
Fundraisers take many shapes and forms and they do it for so many reasons loved ones friends personal goals
Anne ran the first two Melbourne City2Sea events in 2011 and 2012 She heard about Belinda and Bec through friendship with Becrsquos Godmother and went on to learn more about ANZUP its research and fund raisingFrom there Anne knew where she would direct her charity run fund-raising efforts which come via sponsorship of race entries She ran City2Sea to raise money for ANZUP in November 2013 and last year as well as fitting in the RunMelbourne event in July So far she has raised more than $1000 for the causeldquoThere is a really competitive field for the fund-raising dollar and lots of really good causesrdquo said Anne ldquoI really became interested in helping ANZUP when I became aware of Belinda and Bec about six months before Bec diedldquoIt is good to know that fundraising like this is also helping someone elseldquoBelinda gets a huge group together for the City2Sea In November last year the team was 80-strongAnne now runs two mornings a week with a long run on Sundays to help maintain her fitness levels As just reward for all her efforts she ran a personal best in the 2014 City2Sea run for the first time over a longer 15km courseThe 15km starts outside the MCG and finishes in St Kilda via Federation Square and a loop around Albert ParkTo date the City2Sea has raised more than $1 million for more than 600 charities Last year the run attracted around 12000 participantsSo does all this running mean Anne is setting her sights on a full marathon sometime ldquoNo Not a bit of it Irsquom not pitching for a full one Irsquom just aiming to get my time downrdquo she saidAnd to help raise money for ANZUP of course
Fundraising championsAnne Wallington - Victoria
18 A LITTLE BELOW THE BELT
ANZUP is delighted Anne took to pounding the pavement because she has become one of those committed fund-raisers who make all the difference to the grouprsquos ability to get on with its job
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 19
The power of the internet means that today more than ever there is a wealth of information available to help inform our health decisions While this offers big advantages it can also leave us feeling overwhelmed In this article we hope to provide some tips to help you navigate your way around this increasingly complex information environment lsquoSocial mediarsquo lsquoonline mediarsquo lsquowebsitesrsquo hellip the range of online health information is dizzying If you have ever searched for health information online you will appreciate that at times making the best choices can be both time consuming and stressful Over the past five years there has been a dramatic shift in patients playing a more active role in decision making and searching for more health information Patients and carers are also sharing their own experiences via online blogs Twitter or Facebook and online patient communitiesPeople are now equipped engaged and empowered but education is key to ensuring they get the most reputable information So letrsquos start
Top 10 Tips for Finding Credible Information1 The URL (web address) is a good signpost to a sitersquos credibility Sites that have an address containing these elements will be reputablegov Government sitesedu Universitymedical schooleducational institutionsorg Not-for-profit groups with a focus on research2 Identify follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article)3 Seek out and check references and citations (basis of the research and sources) Make sure material is lsquoevidence-basedrsquo4 If possible look for any lsquodeclarations of interestrsquo in relation to the source of any financial assistance towards the production of the information5 Always remember to discuss the information you have found with your GP and medical specialist6 Beware of websites selling cures or health remedies7 Is there a privacy policy on the website Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or
Searching for Credible Health InformationSocial media expert Jenni Beattie provides an insight into
how to find credible health information online
tscsm
Testicular cancer
blcsm Bladder cancer
PCSM
Prostate cancer
kcsm
Kidney cancer
e-mail address Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies 8 Check the lsquocurrencyrsquo of the material what is the date of publication is it the most recent version9 Never divulge personal information online such as phone numbers date of birth and addresses 10 Be careful when and where you comment on information Google archives everything Be sure you are happy with what is said before you ldquopublishrdquo Always re-read what you write and ask yourself if you will be happy with your comments in the future
Websites and Hashtags of Notel l l l l l l l l
If you are an active Twitter user there are also Twitter chats that you can follow Please view this website to see what is available httpwwwsymplurcomhealthcare-hashtagstweet-chatsThe following hashtags can also be followed on Twitter particularly during the ASCO ASM and are a useful way to aggregate particular interest areas
Jenni is a recognised Social Media commentator
httpwwwcancerorgau
httpwwwcancercouncilcomau
httpwwwanzuporgau
httpwwwprostateorgauhttpcanceraustraliagovau
httpwwwcancervicorgauhttpwwwkidneyorgauhttpwwwcancerinstituteorgauhttpwwwmskccorg
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
20 A LITTLE BELOW THE BELT
Current ANZUP trials
If you would like to know more about any of these trials please
discuss it with your GP or specialist
l What is the purpose of the studyl What does the study involve What kinds of tests and treatments (Find out what is done and how it is done)l What is likely to happen to me with or without this new research treatment What could the cancer do and what could this treatment dol What are my options and what are their advantages and disadvantagesl Are there standard treatments for my case and how does the study compare with theml How could the study affect my daily life
Questions you may consider if you participate in a clinical trial
If you are thinking about taking part in a clinical trial here are some important questions to ask
l What side effects could I expect from the study (There can also be side effects from standard treatments and from the disease itself)l How long will the study last Will it require an extra time commitment on my partl Will I have to be hospitalised If so how often and for how longl Will I have any costs Will any of the treatment be freel If I am harmed as a result of the research what treatment would I receivel What type of long-term follow-up care is part of the study
Ask questions
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 21
The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP which consists of three chemotherapy agents ndash Bleomycin Etoposide and Cisplatin ndash administered on a three-weekly cycle BEP is given with a drug called pegylated G-CSF ( or pegfilgrastim) that stimulates white blood cell production
The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule and will be well tolerated The two-weekly schedule is called ldquoaccelerated BEPrsquo and the three-weekly schedule is called ldquostandard BEPrdquo
Up to 500 patients will be enrolled in the study in Australia New Zealand and other countries Currently we have 29 sites open in Australia and New Zealand that are recruiting participants at a steady rate We are also undergoing negotiations to set up the trial in Ireland with the support of the All-Ireland Clinical Research Group (ICORG) and the Medical Research Council Cambridge University UK
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-p3bep
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the P3BEP ANZUP clinical trial are
QLD
bull ICON Cancer Centre (HOCA Wesley)bull Princess Alexandra Hospitalbull Royal Brisbane amp Womenrsquos Hospital
ACT
bull Canberra Hospital
SA
bull Flinders Medical Centrebull Royal Adelaide Hospital
TAS
bull Royal Hobart Hospital
NSW
bull Calvary Mater Newcastlebull Chris OBrien Lifehousebull Concord Repatriation General Hospitalbull Macquarie Cancer Clinical Trialsbull Nepean Hospitalbull Princes of Wales Hospitalbull Royal North Shore Hospitalbull Sydney Adventist Hospitalbull The Tweed Hospitalbull Westmead Hospital
VIC
bull Austin Healthbull Box Hill Hospitalbull Peter MacCallum Cancer Centrebull Royal Melbourne Hospital
WA
bull Fiona Stanley Hospital
NZ
bull Auckland Hospitalbull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospital
ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study This will involve the collection of blood and tissue from participants for future correlative studies
Testicular CancerGerm Cell Tumours
PHASE III Accelerated BEP Trial
Current ANZUP trials
Germ Cells are the cells in the body that develop into sperm
or eggs
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
BL12 Search for more effective urothelial cancer drugs pull out quote
Urothelial cancer occurs in specialised cells seen in the urinary system the kidney the bladder and associated structures such as the ureters which connect the kidneys to the bladder A new treatment called nab-paclitaxel is being studied for use in urothelial cancer It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer
Research is needed to identify more effective treatment after urolithelial cancers become refractory to prior chemotherapy agents Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin Potentially the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer Nabnot-paclitaxel is currently approved in Australia for use in metastatic breast lung and pancreatic cancer
Neither drug has been approved in Australia for use in urothelial cancer The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed
Approximately 100 participants from 27 Australian sites will take part
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpswwwanzctrorgauTrialRegistrationTrialReviewaspxid=366944
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the NCIC (Canada) Funding is also provided by NCIC CTG
Current locations for the BL12 trial are
NSWbull Calvary Mater Newcastlebull Concord Cancer Centrebull Prince of wales Hospital
SAbull Ashford Cancer Centrebull Flinders medical Centre
VIC bull Epworth Freemasons Hospitalbull Peninsula Health Frankston Hospitalbull St Vincentrsquos Hospital Melbourne
BCG + MMCNon-muscle invasive bladder cancer is common and causes substantial suffering It requires removal or irradiation of the bladder within five years in more than 30 of people with high-risk tumours despite best current treatment Recent preliminary studies show promising results from adding Mitomycin a chemotherapy drug to current treatment with BCG (bacillus calmette-guerin ndash a strain of modified bacteria which stimulates an immune response to early cancer cells)
This randomised trial will determine the effects of adding Mitomycin on cure rates survival side effects and quality of life This could potentially provide a simple and cost-effective treatment for patients who suffer from this cancer Earlier in the year there had been a worldwide shortage of the BCG but fortunately this has not affected the trial significantly - we are able to continue to get supplies to ensure the trial can continue
It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand To date 34 patients have been recruited from 12 sites This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentasppage=trials-bcgmmc
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Cancer Australia
Current site locations for the BCG + Mitomycin trial are
NSWbull Concord Repatriation General Hospitalbull Northern Cancer Institute bull Sydney Adventist
VICbull Austin Healthbull Box Hill Hospitalbull Footscray Hospitalbull Frankston Hospitalbull Royal Melbourne Hospitalbull The Alfred Hospital
WAbull Fiona Stanley Hospital
Current ANZUP trials
22 A LITTLE BELOW THE BELT
Bladder Cancer
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 23
Prostate Cancer
Current ANZUP trials
ENZAMETThe treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body) starts with medications that manipulate the hormone levels in the body Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens These medications often work very well for prostate cancer but only for a limited time Eventually the metastatic prostate cancer develops resistance to hormonal manipulation (ie so-called ldquocastrate resistant prostate cancerrdquo) and requires different hormonal therapy or chemotherapy
This study is designed to assess a new anti-androgen tablet called Enzalutamide Enzalutamide has been shown in international trials to improve outcomes for men with metastatic prostate cancer These trials have demonstrated that when men develop castrate resistant prostate cancer Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes Furthermore quality of life was significantly improved
The purpose of the ENZAMET trial is to establish if the use of Enzulatmide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens
ENZAMET will be an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 1100 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zeland sites in the process of being activated To date 164 patients have been recruited There are currently eight sites open in Ireland and the UK led by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) One site has been opened in Canada led by the collaborative group National Cancer Institute Canada (NCIC) and negotiations are under way for further sites to be opened in Europe and USA
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC)
Funding for this trial is provided by Astellas Pharma Australia
Current site locations for the ENZAMET clinical trial are
NSW
bull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Concord Cancer Centrebull Nepean Cancer Care Centrebull Northern Cancer Institutebull Port Macquarie Base Hospital ndash NCCIbull Prince of Wales Hospitalbull Riverina Cancer Centrebull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Hospitalbull Tamworth Hospitalbull The Tweed Hospitalbull Wollongong hospital
NTbull Royal Darwin Hospital
QLDbull Gold Coast Hospitalbull Nambour General Hospitalbull Princess Alexandria Hospital Brisbanebull Royal Brisbane and Womenrsquos Hospitalbull Townsville Hospital
SAbull Ashford Cancer Centrebull Flinders Medical Centrebull Royal Adelaide Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Australia Urology Associatesbull Box Hill (Eastern Health)bull Goulburn Valley Healthbull Monash Cancer Centre ndash Moorabbinbull Peninsula South Eastern Haematology and Oncology Group (PSEHOG)bull Peter MacCallum Cancer Centre- East Melbournebull St Vincentrsquos Hospital
WAbull Fiona Stanley Hospital
UKbull Aberdeen Royal Infirmary bull Royal Cornwall Hospital
USAbull Dana-Farber Cancer Institute
Canadabull Algoma District Cancer Program Sault Area Hospitalbull Cross Cancer Institutebull QEII Health Sciences Centre CDHA
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
Prostate Cancer
ENZARADProstate cancer is often treated with powerful X-rays (Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery The reasons for choosing radiotherapy or surgery are complex and are the focus of a discussion that men should have with their treating doctors We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate In this situation we are aiming for a cure if possible and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment This treatment is called Androgen Deprivation Therapy (ADT) ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens
ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment This trial is for those who after discussion with their specialists were not recommended for radical prostatectomy due to their pathology or core morbidities Men who have both testes removed also will not be eligible The purpose of the ENZARAD trial is to find out if the addition of Enzalutamide to radiotherapy plus ADT will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere
It is an international trial run by ANZUP in multiple centres in Australia New Zealand Canada Ireland and the UK The aim is to have 800 participants from these countries Participants will stay on the study drug until there is evidence of progression and will be followed for a minimum of 35 years from entering the trial
To date 33 sites have been activated with another seven Australian and New Zealand sites in the process of being activated To date 83 patients have been recruited There are currently four sites open in Ireland lead by the collaborative group Ireland Cooperative Oncology Research Group (ICORG) and negotiations are under way for further sites to be opened in Europe
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)
This trial is funded by Astellas Pharma Australia
Current site locations for the ENZARAD trials are
NSW
bull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Servicesbull Chris OrsquoBrien Lifehousebull Gosford Hospitalbull Liverpool Hospitalbull Prince of Wales Hospitalbull Tamworth Hospitalbull Westmead Hospital
QLDbull Mater Adult Hospitalbull Nambour General Hospitalbull Princess Alexandra Hospital Brisbanebull Royal Brisbane and Womens Hospitalbull Toowomba Hospital
SAbull Ashford Care Researchbull Flinders Medical Centre and Repatriation General Hospital
TASbull Royal Hobart Hospital
VICbull Austin Hospitalbull Box Hill (Eastern Health)bull Epping Radiation Oncology Centrebull Epworth Health Care - Richmondbull Epworth Health Care - Freemasonsbull Frankston Radiation Oncology Centrebull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Ringwood Radiation Oncology Centrebull Western Radiation Oncology Centre Footscray
NZbull Christchurch Hospitalbull Auckland City Hospital
Irelandbull Cork University Hospitalbull Galway University Hospitalbull Mater Misericordiae University Hospitalbull Mater Private Hospital
USAbull Dana Farber Cancer Institute
Current ANZUP trials
24 A LITTLE BELOW THE BELT
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
RAVESRadical prostatectomy is the most common curative approach offered to men with newly-diagnosed prostate cancer Unfortunately up to half these patients will have factors placing them at high risk of cancer recurring Undergoing radiotherapy after an operation is known to improve care rates but what is not known is whether it should be given immediately after the operation or only if PSA rises after surgery ndash indicating active cancer
Immediate radiotherapy may not benefit all men and can cause serious side effects such as bladder problems and impotence
International lack of consensus on the optimal timing of radiotherapy has resulted in varied clinical practice
This Trans-Tasman Radiation Oncology Group (TROG) led Phase III trial in collaboration with ANZUP and USANZ will compare the two approaches
If radiotherapy at recurrence results in equivalent outcomes and improved quality of life it wouldbecome the standard treatment
A total of 470 men from Australia and New Zealand will participate
This study is currently active and recruiting Please speak with your doctor if this is of interest to you or someone you know
For more information please go to the trials page on the ANZUP website httpwwwanzuporgaucontentaspxpage=trials-prostate
This trial is funded by The National Health and Research Council Royal Australian and New Zealand College of Radiologists Auckland City Hospital Cancer Council Victoria Cancer Council NSW Nwe zealand Health and Research Council and the Trans Tasman Radiation Oncology Group
Current site locations for the Raves trial are
NSWbull Calvary Mater Newcastlebull Campbelltown Hospitalbull Central West Cancer Centrebull Liverpool Hospitalbull Nepean Hospitalbull Port Macquarie Base Hospitalbull Riverina Cancer Care Centrebull Royal North Shore Hospitalbull Royal Prince Alfred Hospitalbull St George Hospitalbull St Vincentrsquos Hospital Sydneybull Sydney Adventist Network Gosford and Wahroongabull Westmead Hospital
VICbull The William Buckland Radiotherapy Centre The Alfredbull Austin Hospitalbull Bendigo Hospital (Peter MacCallum Radiotherapy Centre)bull Peter MacCallum Cancer Centre (East Melbourne)bull Peter MacCallum Cancer Centre (Moorabbin Campus)bull Peter MacCallum Cancer Centre
QLDbull Genesis Cancer Care Queenslandbull Mater Centrebull Nambour General Hospitalbull Princess Alexandra Hospitalbull Radiation Oncology Mater Centrebull Radiation Oncology Queensland Gold Coastbull Toowoomba Cancer Research Centrebull Royal Brisbane amp Womenrsquos Hospitalbull Toowomba Cancer Research Centrebull Townsville Hospital
WAbull Perth Radiation Oncology Centrebull Royal Perth Hospitalbull Sir Charles Gairdner Hospital
NZbull Auckland City Hospitalbull Auckland Radiation Oncologybull Christchurch Hospitalbull Dunedin Hospitalbull Palmerston North Hospitalbull Waikato Hospitalbull Wellington Hospital
Prostate Cancer
Current ANZUP trials
A LITTLE BELOW THE BELT 25
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
26 A LITTLE BELOW THE BELT
Innovation amp Education
ClinTrial App In July 2014 ANZUP released its first trial based App This application was designed for the specialists but will also be a very useful tool for consumers If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer
The ClinTrial Refer ANZUP appprovides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand
Designed for oncologists general practitioners research unit staff and patients ClinTrial Refer ANZUP has searchable clinical research trial details hospital locations and contacts and inclusion and exclusion criteria
We hope this will help the community to identify trials that might be suitable
To download the free app please visit
bull Apple iTunes httpsitunesapplecomauappclintrial-refer-anzupid894317413mt=8
bull Google Play httpsplaygooglecomstoreappsdetailsid=comlpsanzup
Or go to the AppAndroid store and type in ANZUP
ANZUP wishes to thank our corporate supporters and partners for 2015
WOULD YOU LIKE TO HELP US
Any donation to ANZUP over $2 is fully tax deductible If you would like to donate to ANZUP you can donate
through our website wwwanzuporgau or by calling ANZUP on
+61 2 9562 5033
100 of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder kidney
testicular and prostate cancers
DONATE NOW
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
A LITTLE BELOW THE BELT 27
About clinical trials
Why are randomised trials necessaryRandomised trials are the only way to reliably answer the question ldquohow much better will you do on one treatment versus anotherrdquo The alternative is to compare a group of people that doctors chose to give one treatment versus another group of people that doctors chose to give a different treatment The problem is that the two groups of people are unlikely to be similar and the differences between people themselves are usually more important than the differences between the treatment they are given Doctors are good at recognising people who are likely to do better or worse and the treatments they choose to give are often influenced by this knowledge When we compare the results in two groups of people the big question is how much of the difference in results we observed is due to the treatment and how much of it is due to the differences between the individuals themselves The best way of ensuring that groups of people are as similar as possible is to allocate people to the groups and therefore treatments by chance This is what randomisation does Professor Martin Stockler ndash Medical Oncologist
Ask the Dr
PHASE IV studies are done after an intervention has been marketed These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time
Clinical trial phases
PHASE I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (eg to determine a safe dosage range and identify side effects)
PHASE II clinical trials are done to study an intervention in a larger group of people ( up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety
PHASE III studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely
The National Health and Medical Research Council defines the phases of trials as
Am I going to be a guinea pigOne of the most commonly asked questions to me is whether it will cost a person anything and ldquoam I going to be a guinea pigrdquo Obviously there should be no cost above normal treatment costs and in some instances there may be no cost at all Many people when confronted with a clinical trial for the first time may think they are being treated as a guinea pig but all the evidence shows that people who are participating in clinical trials are receiving the best level of clinical care and have in general better outcomes than those who are not participatingAssociate Professor Guy Toner ANZUP Deputy Chair
What if I get the placeboIn randomised trials people are allocated either to a promising new treatment or to a standard treatment All clinical trials conducted by ANZUP and other research groups in Australia and New Zealand must ensure that the standard treatment is the very best standard care available A placebo is never given by itself when there is a proven treatment availableDr Peter Grimison Staff Specialist
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15
R I D I N G F O R U R O G E N I TA L CA N C E R S
REGISTER TO RIDE
As a young adult I never considered I would be diagnosed with testicular cancer The good news is that through early detection and the incredible medical advice provided by ANZUP I am able to carry on with my life as though very little happened Others are not so fortunate Thatrsquos why I founded the Below the Belt Pedalthon Good luck in 2015 and thank you for your support
Simon Clarke
Riding for 4 hours to defeat 4 cancersTesticular prostate kidney amp bladder cancers
EVENT OVERVIEW
Australian amp New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group
wwwbelowthebeltorgau
EVENT DETAILS Tuesday 1st September 2015730am Registration 830am Event amp Safety Briefing 900am 3 Hour Team Challenge 1200pm Sprint Challenge 100pm Lunch Awards Celebration Cost $2000 per team excl GST
BTBpedal15