A GUIDE TO

UVEAL MELANOMAMELANOMA OF THE EYE:An information guide for patients newly diagnosed with uveal melanoma

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The Melanoma Network of Canada (MNC) is a national,

patient-led, charitable organization. The mission of the MNC

is to provide melanoma patients and their caregivers with

current and accurate information and services about the

prevention and treatment of melanoma.

Melanoma Network of Canada

1155 North Service Road W, Unit 11

Oakville, Ontario L6M 3E3

P: 905-901-5121 | www.melanomanetwork.ca

ACKNOWLEDGMENTSWe would like to thank all the patients who shared their experiences and

opinions with us. We would like to show our appreciation and gratitude to

the following individuals who provided their expertise and review for the

development of this booklet:

• AnnetteCyr,Chair,MelanomaNetworkofCanada• AnthonyJoshua,MBBS,PHD,PrincessMargaretHospital• HatemKremaMD,OcularOncology,PrincessMargaretHospital,

UniversityHealthNetwork• AnthonyB.Mak,PhD,MD2016Candidate,UniversityofToronto• E.RandSimpsonMD,OcularOncology,PrincessMargaretHospital,

UniversityHealthNetwork• LeahIszakovitsMA,PMP,patient

WewouldliketothankPrincessMargaretHospitalforitsfinancialsupport to make this educational material available for all the patients.

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TABLE OF CONTENTSQuick facts .............................................................................................................. 3

Introduction

Theeye .............................................................................................................. 4 The uvea ............................................................................................................ 5 Uveal melanoma ................................................................................................. 5 Risk factors ........................................................................................................ 5

Detection

Howisuvealmelanomadetected? .................................................................... 6 Howisuvealmelanomadiagnosed? .................................................................. 6 Whatistheprognosisifdiagnosedwithuvealmelanoma? ............................... 7 Howisuvealmelanomastaged? ........................................................................ 8

Treatment and management Whoisrecommendedfortreatment? ................................................................ 9 Whatarethetreatmentoptionsforuvealmelanoma? ....................................... 9 Radiationtherapy .............................................................................................. 9 Brachytherapy – Plaque Radiotherapy ........................................................... 9 External Beam Radiation Therapy (EBRT) – Teletherapy ............................... 10 Surgery ............................................................................................................11 Enucleation .................................................................................................11 Local tumour removal ..................................................................................11 Genetic testing ................................................................................................12 Other therapies ...............................................................................................12

Surveillance and management of metastases ..................................................... 13

Social support .......................................................................................................15

Questions to ask your healthcare team ............................................................... 16

Resources..............................................................................................................17

Glossary ................................................................................................................18

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QUICK FACTS• Uvealmelanomaisthemostcommoneyecancerinadults.• Althoughitiscalledmelanoma,itismuchrarerthanskinmelanoma,

approximately200peoplearediagnosedinCanadaeachyear.• Treatmentoptionsincluderadiationtherapyandsurgery.Thereisno

chemotherapyforuvealmelanoma.• Thereisnocureformetastaticuvealmelanoma;however,thereare

treatment options.

• Ifyouarediagnosedwithuvealmelanoma,youarenotalone,therearesupportprogramsandpeopletohelpyou!

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INTRODUCTION Thereareseveraldifferenttypesofeyecancer.Thisinformationguidefocusesonuveal melanoma.

Melanomaisamalignanttumourofthemelanocytes.Melanocytesarepigmentedorcolour–producingcellsfoundinvariouslocationsinthebodyincludingtheskin,hairandeyes.Melanomaoftheskin(orcutaneousmelanoma)ismuchmorecommonandisverydistinctfrommelanomaoftheeye(oruvealmelanoma).Uvealmelanomaisalsoknownasprimaryintraocularmelanoma.Aninformationbookletonskinmelanomaentitled“Melanoma,WhatYouNeedtoKnow”isavailable from the Melanoma Network of Canada at www.melanomanetwork.ca.

The eye:Theeyeisaballwithawallmadeofthreelayers:Theouterlayeristhewhitevisibleportioncalledthescleraandthereisaclearportionthatcoversthefrontoftheeyecalledthe“cornea”.Themiddlelayeriscalledtheuveaandiscomprisedoftheiris,whichisvisiblethroughthecornea,theciliarybodyandthechoroid,whichareundercoverofthesclera.Amoredetailedpictureoftheuveaiscapturedinthediagramdirectlybelow.Theinnerlayeriscalledtheretina.Itiscomprisedofcellsthatcansenselightandtransmit this information via the optic nerve to the brain for vision.

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The uvea:Theuvea(oruvealtract)isthemiddlelayeroftheeye.Asmentioned,theuveahasthreeparts:theiris,theciliarybodyandthechoroid.1. Theirisprovidesaperson’seyecolourthatsurroundsthepupil.2. Theciliarybodyisamusclethatcontrolsthesizeofthepupilandtheshape

ofthelenstohelptheeyefocus.3. Thechoroidisalayerofbloodvesselsthatprovidetheeyewithnutrients

andoxygen.Thepreviousstructurescontainplentyofmelanocytes.

Uveal melanoma:Uvealmelanomareferstomelanocytesoftheuveathatbecomecancerous. Thiscanoccurinanypartoftheuvea:theiris,theciliarybodyand/orthechoroid.Uvealmelanomacasesoccurnearly85%ofthetimeinthechoroid,another 10%intheciliarybodyandapproximately5%intheiris.Althoughuvealmelanoma(eye)andcutaneousmelanoma(skin)bothaffectmelanocytes,theyaredistinctcancers.Uvealandcutaneousmelanomasaredistinctinthattheyhavedifferentgeneticmutations,theybehavedifferently, andcutaneousmelanomaismuchmorecommon(nearly40timesmorecommon).Havinguvealmelanomadoesnotmeanyouwilldevelopcutaneousmelanoma

or vice versa.

Risk factors and prevention:The cause of uveal melanoma is unclear. Therefore, we do not know how to

preventuvealmelanoma.Unlikeskinmelanoma,whichisoftencloselylinkedtoUV radiation damage from the sun or other sources, there is no hard evidence

tosupportcausalrelationship.However,therearefactorsthatwerelinkedtoincreased risk for uveal melanoma. These include:

1. Lighteyecolour,suchasblueorgreeneyes2. Fair skin colour

3. Beingolderinage.Themedianageatdiagnosisis55yearsold.Although research studies have found an association with these factors, uveal

melanomacanoccurinanypersonregardlessofage,genderorrace.

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DETECTIONHow is uveal melanoma detected?Apersonwithuvealmelanomamayhavenosymptomsandthetumourcan

bediscoveredduringroutineeyeexam,oritmayproducesomesymptoms.Forapersonexperiencingsymptoms,thesemayinclude:• Visionchange(e.g.blurredvision,flashinglights,unexpectedseeingof

shadows,seeingfloatingspots,lossofperipheralvision)• Eyepain• EyerednessThesesymptomsaresimilartomanyothereyeconditions,suchascataractsandglaucoma,andareNOTspecifictouvealmelanoma.Ophthalmicexaminationshouldbecarriedoutbyaspecialisttodiagnoseorruleoutthepresenceofmelanoma.

Apersonwithmelanomaintheirismaynoticechangesintheirisaspresenceof a growth, or changes in iris colour and changes in the size and shape of the pupil.

How is uveal melanoma diagnosed? ThereisNOformalscreeningprogramforuvealmelanoma.Routineeyeexamsarethebestoptionforidentifyingpotentialissues.Eyeexam:Aneyeexamisperformedbyanoptometristoranophthalmologistandisapainlessprocedure.Theoutsideandinsideoftheeyeareexaminedforanyabnormalities.Specialeyedropsthatdilatethepupilmaybeusedtohelpseetheinsideoftheeye.Adiagnosisofuvealmelanomacansometimesbemadebyaneyeexamalone.PHOTOGRAPHY:Differenttypesofspecializedphotographsareusedtotakepicturesoftheoutsideandinsideoftheeyeandcanhelpwiththediagnosisofeyeconditions,suchasuvealmelanoma.Also,bycomparingphotographsbeforeand after treatment, photographs can also help determine whether the treatment

deliverediseffective.

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ULTRASONOGRAPHY:Ultrasonographyuseshighfrequencysoundwavestohelpseetheinsideoftheeye.Anaestheticeyedropsmaybeusedtonumbtheeyesothatanultrasoundprobecanbeplacedontheeye’ssurface.Ultrasonographycanbe used to determine the tumour size, shape and location.

TRANSILLUMINATION:Transilluminationusesalightthatisplacedontheeyesurfacetoexamineeyestructuresforanygrossabnormality.

FLUORESCEIN ANGIOGRAPHY:Fluoresceinangiographyisusedtoseehowthebloodisflowingintheeyeandtoseethebloodvessels.Afluorescentdyecalledfluoresceinisinjectedintoanarmvein,andthedyetravelstotheeyeinjustafewseconds.Aspecialeyeinstrumentcandetectthisfluorescencetohelpusseeifthereisanydamagetotheeyebloodvessels.

RECENT IMAGING TECHNIQUES:TheseincludeOpticalCoherenceTomography(OCT),InfraredFundusPhotography,IndocyanineGreenAngiography(ICG),andFundusAutofluorescence.Theyaremodernsensitivetechniquestoimagesubtlechangesinthetumourandnearbystructures.

BLOOD TESTS:Abloodsamplemaybetakentodeterminehowwellorgansinyourbody,suchastheliver,areworking.Analyzingthebloodmayhelpdeterminewhether the tumour has spread to the liver.

SCANS:X-raysallowsvisualizingofinternalbodystructures.A3DX-raycalledComputedTomography(orCT)maybetakenofcertainpartsofthebodytosee

ifthereisanyspreading(ormetastasis)oftheuvealmelanomatumour.A2D

X-rayofthechestmaybetakenasanalternativetoaCTscan.MagneticResonanceImaging(MRI)mayalsobeusedfora3Dimageanditdoesnotuseradiation, but takes longer than a CT.

BIOPSY: Abiopsyisawaytogetasampleofthetumourcells,usuallybyusing

afineneedle.Itistypicallynotperformedforuvealmelanomadiagnosisasothertestsareusuallyenoughtomakeadiagnosis.Abiopsymaybeperformedsoitcanbeanalyzedbyamedicalgeneticisttostudythetumour’sDNA.Thisinformationcanbeusefulfordeterminingsurvivalprognosisofthepatientandhis/hereligibilityforclinicaltrials.

What is the prognosis if diagnosed with uveal melanoma?Prognosisisatermusedtohelppredictthelikelyoutcomeofapatientwith

a health condition. Prognosis can refer to the likelihood of a patient surviving

after diagnosis of a tumour. There are a number of factors that can help

determine the prognosis for a patient with uveal melanoma. The most helpful

factors to determine prognosis are the tumour’s size, the tumour’s location

and genetic testing.

1) Tumour size: The larger the tumour base and height, the less favourable the

prognosis.

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2) Tumourlocation:Irismelanomashaveabettersurvivalprognosisthanciliarybodymelanoma.Theprognosisforchoroidalmelanomasisinbetweenirisandciliarybodymelanomas.

3) Spreading:Atumourspreadingoutsideoftheeyewallortootherpartsofthebodyhasaworseprognosis.

4) Returnofthetumour:Sometimesthetumourcanreturnaftertreatment.Thisis called relapse or recurrence. This is associated with a worse prognosis as

thetumourmaynolongerrespondtotreatmentandhasbeenshowntohavean increased likelihood of spreading.

5) Geneticfactors:Thisisthemostimportantdeterminantofsurvivabilitychancesinuvealmelanoma.ChangesintheDNAandchangesinspecifictumourgenesmayhavearoleinprognosisandcanbedeterminedbygenetictesting.Abiopsy(asampleofthetumourtakenusingafineneedle)isrequiredtodogenetictesting.Ifyouareinterestedinexploringthispossibilityandtodeterminewhetheryoumaybeacandidateforgenetictesting,pleasespeakwithyourocularoncologist.

6) The patient: The patient’s age, general health status and other medical

conditionsallplayaroleinprognosis.Thiscanbediscussedwithyourdoctor.

The outcome regarding vision: Factors that may affect vision after treatment include:1) Tumour size: A larger tumour increases the risk of vision loss.

2) Tumour location: A tumour closer to the optic disk or macula increases the risk

of vision loss.

3) Othermedicalconditions:Othermedicalconditions,suchascertaineyeconditionsanddiabetes,uncontrolledhypertensionincreasetheriskof vision loss.

How is uveal melanoma staged? Therehasbeenseveralcategorizationsystemsofuvealmelanomaaccordingtotheirdimensions,cellulartypeorgeneticdefects,andtheirlinktothepotentialforspreadoutsidetheeye.

The current most practical categorization is the TNM staging.

Stage:Uvealmelanomastageisdescribedas“TNM”,whichstandsforTumour,Nodeand Metastasis. Tumour refers to the tumour size and whether it has invaded

neighbouring tissues. Node refers to whether cancer has or has not spread to

lymphnodes(organsinthelymphaticsystemthatcontaincollectionsofimmunecells). Metastasis refers to whether cancer has spread to distant sites.

TNMisastagingsystemthatcanindicateprognosisforthepatient.TheTNMofanindividual patient can be complex to explain and it is advised that patients discuss

the details of their TNM stage with their ocular oncologist.

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TREATMENT AND MANAGEMENTWho is recommended for treatment?Treatmentisnotalwaysrecommendedforpatientsdiagnosedwithuvealmelanomaanddependsonmanyfactors,includingthelocationandsizeofthetumour and a patient’s overall health. For example, watchful waiting and close

monitoringmayberecommendedforanelderlychronicallyillpatientwhodoesnothaveanysymptomsandhasasmallsizedtumour.Otherwise,uvealmelanomashouldbepromptlytreated.

What are the treatment options for uveal melanoma?Thetreatmentoptionsforuvealmelanomamayincluderadiationtherapyorsurgery.Somepatientswillreceivebothradiationtherapyandsurgery.

1. RADIATION THERAPY Radiation is used to kill tumour cells.

There are two main forms of

radiationtherapytotreatuvealmelanoma:Brachytherapy(orPlaqueTherapy)andExternalBeamRadiationTherapy(EBRT)(orTeletherapy).Brachytherapyusesaplaquethatisplaceddirectlyontheeye.InEBRT,amachine delivers the radiation

treatmentfromoutsidetheeye.

(i) Brachytherapy or “Plaque Therapy”isthemostcommonformofradiationtherapyusedandismostwidelyavailable.Brachytherapyisusedtodeliverradiation

thatisconfinedtothetumour.Therearevarioustypesofradioactiveplaqueswith

Image source: University of Chicago Medicine © 2012 Terese Winslow LLC

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differentradioactiveseedsthatcanbeusedforBrachytherapy.Eachtypeofseeddiffersonitsabilitytopenetratethetissue.Theplaquewillbephysicallyplacedontheeyetobeclosetothetumour.Thisrequiresanoperationtopositiontheplaqueontheeye.Treatmentcanlastuptooneweekandwillrequireasecondoperationtoremovetheplaque.Brachytherapymaynotbeusedwhenthetumourisveryclosetotheopticdisc,which is where part of the optic nerve (the nerve which allows us to see) is

situated,andTeletherapymaybeusedinstead.Brachytherapyisalsonotusedontumoursthataretoobig(usuallygreaterthan12mmthick)becausetheradiationcanonlypenetratesofar.SinceBrachytherapyisveryprecise,manypartsoftheeyewillremainunaffectedwhilethelocalizedradiationtreatmentwill treat the tumor.

AlthoughBrachytherapyisanexcellenttreatmentformostuvealmelanomapatients,itmayhavesomeconsequencesonyourtreatedeye.Theriskoftheseconsequencesdependsuponthesizeandlocationoftheuvealmelanomainsidetheeye,aswellasthetypeofradioactiveplaqueandtheradiationdoseduringtreatment.Possiblesideeffectsare:• Radiationretinopathy–damagetovesselsthatsupplybloodtotheretina.

This will result in some level of vision loss.

• Opticneuropathy–damagetothenervethatallowsthepersontosee.• Othercomplications–increasedriskforcataracts,higheyepressure,internal

bleedingoftheeyeandrarely,necrosisofeyetissue.• Long-termcomplications–poorervision.

(ii) External Beam Radiation Therapy (EBRT) isalsoknownasTeletherapywhichinclude

charged particle irradiation (e.g. Proton

BeamRadiotherapy),StereotacticRadiotherapy,orGammaKnife.DifferenttypesofEBRTisonlyavailable at certain treatment

centres in Canada.

EBRTusesamachinethatdelivers a beam of radiation to the

affectedpartoftheeyethroughthefrontoftheeyeonly.Incaseofprotonbeamradiotherapy,aneyeoperationmayberequiredto

place metal clips or tags to help

themachineknowexactlywhere to deliver the beam of radiation.Image source: Ohio State University

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EBRTisusedtotreatpatientswithmediumtolargesizedtumoursneartheopticdisc,whereplaquecannotbeplacedtocovertheentiretumourbasebecauseofthephysicalobstructionfromtheopticnerve.ComplicationsofEBRTaresharedwiththoseofplaqueradiotherapy,buttheremayberelativelyhigherratesincaseofStereotacticRadiotherapy.However,thislargelydependsontumourfactors,suchasitslocationandsize,andpossiblythedoseofradiationreceived.

2. SURGERYSurgical removal of the tumour depends on factors such as how fast the tumour

is growing and the location of the tumour.

Therearetwomainformsofsurgerytotreatuvealmelanoma:REMOVAL OF THE EYE (ENUCLEATION): Removaloftheeyeisalsoknownasenucleation.Enucleationisconsideredincaseswhereradiationtherapymaybeinsufficienttotreatthetumour,suchaswhenthesizeoftheuvealmelanomaisparticularlylarge,whenthetumourhassignificantlocalspreadingbeyondthewhiteportionoftheeye(thesclera)and/orapainfuleyeduetoaconditioncalledneovascular glaucoma.

Aftertheeyesocketishealed,anartificialeye(orprosthesis)canbecustomized.Thiscustomizationprocessrequiresamoldtobetakenfromtheeyesocketandwilltakeseveralweekstocreate.Whenready,theartificialeyeisfittedtothepatientandshouldlookveryrealisticandhavesomemovement.Oncetheeyesocketiscompletelyhealed,apersonlivingwithanartificialeyecandomostnormal things. It is recommended that goggles be worn during water sports

and snow sports.

LOCAL TUMOUR REMOVAL: Local removal of the uveal melanoma tumour

maybeusedonlyinveryspecificcases,suchaspatientswhoareunabletoundergobrachytherapyanddonotwishtoundergoenucleation.Thislimitationisduetotheneedforhighlyskilledsurgicalexpertise,aswellasthenumberofcomplicationsassociatedwiththissurgery,whichcanaffecttheretinaandcauseinternalbleedingoftheeye.

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3. GENETIC TESTINGEachcellinthehumanbodycontainsetofinstructions(genes);thesegenesarestoredinstructurescalledchromosomes.Healthycellshavetwocopiesofeachchromosome. Cells that are abnormal often show changes in these chromosomes.

Theseabnormalcellsmultiplyatahigherrateandareconsideredtobecancercells.One of the most important indicators of poor prognosis in uveal melanoma is loss

ofchromosome3(monosomy3).Metastaticdiseasedevelopsalmostexclusivelyinpatientswiththisgeneticabnormality.Otherchromosomesthatcanbealteredinuvealmelanomatumorcellsarechromosomes1,6&8.Approximately50%ofthesetumorcellswillshowchromosomalabnormalities;thesetypesoftumorcellshaveahighrisktospread(metastasize)outsideof theeye.Tumorcellsthatshownormalchromosomenumbershaveaverylowrisk to metastasize.

Whilethesechromosomechangesaregeneticchanges,theyarenotinherited(passedthroughthefamily).Thesechromosomechangesoccurbychanceinthetumorcelloftheeye.Theyarenotpresentinanyotherpartsofthebody,specificallytheeggorspermcells,andthereforecannotbepassedontochildren.Genetictestingofuvealmelanomatumorcellsisperformedbyobtainingasampleofcellsfromtheaffectedeye.Thiscanbedoneatthetimeofplaqueradiationtherapyortakenfromaremovedeye.Thissampleisperformedbyyoursurgeonandsentdirectlytothelaboratory.Itiswelldocumentedthatbiopsiestakenfromtheeyeforgeneticanalysiscontainbothhealthyandtumorcells.Forthisreasonasecondtestisperformedtoconfirmtheaccuracybyprovingthatthecellsanalyzedareindeedtumorcellsandnothealthycellsthatmayhavebeeninthesample.

4. OTHER THERAPIESOthertherapiestotreatuvealmelanomaexist,butarenotascommonlyused.Theyincludephotocoagulation,transpupillarythermotherapyandphotodynamictherapy.Speakwithyourocularoncologisttolearnmoreaboutthesetherapies.

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SURVEILLANCE AND MANAGEMENT OF METASTASESSpreadingofcancercellsthroughbloodorthelymphaticsystemtoanotherpartofthebodyiscalledmetastasis.Uvealmelanomacanspreadtolocalstructuresbesidetheeye(knownasextraocularextension),suchastheopticnerve.Uvealmelanoma can also metastasize through the blood and develop in the liver, lungs,

bones and under the skin.

Post primary treatment follow-up and surveillance:Uvealmelanomametastasesmaypresentyearsaftertheprimarytumourhasbeentreated.Apatientwhoreceivestreatment(e.g.brachytherapy,EBRT,orenucleation) can still get metastases from the tumour cells that escaped from

theeyetothebodyPRIORtotreatment.Almost50%ofpatientswithuvealmelanomawilldevelopmetastaseswithin

15yearsofbeinginitiallydiagnosed.2%ofpatientsatthetimeofinitialuvealmelanomadiagnosiswouldshowanevidenceofmetastases.Adiagnosisofuvealmelanomametastasishasaverypoorprognosisand,unfortunately,hasahighrateofmortality.Thereareseveralapproachestosurveillanceformetastases.Becausemetastasesusuallyoccurintheliverandinthelung,teststhatareperformedarefocusedontheseorgans.Thesetestsareperformedevery6-12monthsandcancontinueformanyyearsordecades.However,therearenostandardguidelinesorapproachesfor surveillance as there is no clear consensus amongst experts.

• Bloodtests–todeterminehowtheliverisfunctioning.• Imagingtests–ultrasoundtomonitortheliverandachestX-raytomonitor

thelung.SomepeoplereceiveComputedTomography(CT)orMagneticResonance Imaging (MRI) scans.

• Physicalexam–todetectissues.• Recently,genestudies,byaneedlebiopsyfromthetumourbeforetreatment,

canpredictwithhighaccuracythepotentialtodevelopmetastaseseventually.

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Management of metastases:Although these surveillance measures can indeed detect uveal melanoma

metastases earlier, there are limited treatment options for patients with

metastases. The development of metastases is a serious complication of this

typeofmelanomaandgenerallylimitspatientsurvival,althoughtreatments are improving.

Treatmentoptionsformetastasesispresentlyexperimentalandinvestigational,whichmeansthattheyarebeingstudiedinaclinicaltrials.Someofthesetreatmentoptionsmayincludechemotherapy,immunotherapyandtargetedtherapy.

CHEMOTHERAPYistheuseofchemicalstotreatcancer.Atrialofchemotherapymaybeusedonlyinpatientswithmetastases.Thereiscurrentlynooptimalchemotherapyapproachtotreatmetastases.Thismeansthatthereareanumber ofclinicaltrialsthatareinvestigatingwhichchemotherapyagent,eitherused aloneorincombinationwithotheragents,maybeeffectiveintreatingmetastases.

TARGETED THERAPIESistheuseofdrugstospecificallystopdifferent“engines”of cancer cells from continuing to signal to the cells to reproduce and grow.

Studiesontargetedtherapiesforuvealmelanomasometimesalsousechemotherapy.

IMMUNOTHERAPIESistheuseofpartsofthepatient’simmunesystemtoattackthe cancer.

Patients can speak with their oncologist about potential opportunities to

participate in clinical trials.

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SOCIAL SUPPORTAdiagnosisofuvealmelanomaandcanceringeneralisoftenfilledwithemotionandanxiety.Itiscommonforpeopletobeupset,scaredandangry.Resourcesareavailabletosupportyou,theyinclude:

• The Melanoma Network of Canada (www.melanomanetwork.ca) – UM online

forum where ocular melanoma patients across Canada or their caregivers can

talk with other UM patients and caregivers from around the world.

• Social Media – Connect with the Melanoma Network of Canada on Facebook,

TwitterandYouTube!

• The Melanoma Network of Canada ‘Within Reach’ Peer Support Buddy Program–thisprogramprovidesnewlydiagnosedmelanomapatientswithnon-professional,emotionalsupportfromsomeonewhohas“beenthere”. Formoreinformationonbecominginvolved,orifyouwouldliketorequest abuddyforyourself,pleasecontactMNCat905-901-5121.

• Melanoma Research Foundation (MRF) (www.melanoma.org) – Cure OM

patient online bulletin board where ocular melanoma patients, caregivers and

their loved ones can talk with other OM patients and caregivers from around

the world.

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QUESTIONS TO ASK YOUR HEALTHCARE TEAM1

About disease and treatment• WhattypeofcancerdoIhave?• Whatstageismycancer?• Whatarethepros,consandsideeffectsofmytreatmentoptions?• Whataretheexpectedsurvivalrateswiththesetreatments?• Willreceivingthesetreatmentspreventmefromreceivingadifferenttype

oftreatmentinthefutureifIneedit?• Arethereanymoreteststhatneedtobedonebeforestartingtreatment?• Willtherebeteststodeterminehowmydiseaserespondstothetreatment?• Howoftenwillthesetestsbedoneduringandaftertreatment?• Willyouchangemytreatmentifitdoesnotappeartobeworking?• Howlongwillthetreatmentlast?• HowoftenwillIseeyouduringandaftertreatment?• Whatotherservicesareavailabletohelpmeandmyfamilycopewiththe

disease?

About prognosis and survival• Doyouexpectthesetreatmentstocuremycancer?Ifnot,whatisthegoal

ofthistherapy?• Whatistheusuallifeexpectancyforthistypeofcancer?• Whatarethebestandworstcasescenarios?

1 Questions taken from “Questions you may ask” under “Your first appointment” from the Princess Margaret Cancer Centre,

the University Health Network (www.theprincessmargaret.ca)

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RESOURCES EYE PLAQUE PATIENT INFORMATION BOOKLET is a booklet explaining one of

thetreatmentsforeyecancer. (http://www.theprincessmargaret.ca/en/PatientsFamilies/library/CancerInformation/Brochures/SurgicalOncology/PatientHandouts/Eye_Plaque.pdf)

EYE CANCER NETWORKisadedicatededucationsiteforpeoplewitheyetumoursandtheirfriendsandfamilies.(http://www.eyecancer.com/)

LOST EYEprovidessupportanddiscussionforpeoplewhohavelostaneye.(http://losteye.com/)

BASCOM PALMER EYE INSTITUTEhasinformationaboutdifferenteyeconditions,includingcancer.(http://bascompalmer.org/)

NATIONAL EYE INSTITUTEhasinformationabouteyehealthanddiseases,aswellasdiagramsoftheinsideoftheeye.(http://www.nei.nih.gov/)

IMPACT GENETICS provides genetic diagnostics for uveal melanoma and other

rarediseases.(http://impactgenetics.com/)

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GLOSSARY Brachytherapy:Usesradioactivematerialinsideyourbodytotreatcancer.

Cancer:Abnormalcellsthatcandivideuncontrollably,invadenormaltissues andspreadthroughoutthebody.

Choroid:Apartofthemiddlelayeroftheeyebetweenthesclera(thewhite

partoftheeye)andtheretina.Ithaslayersofbloodvesselsthatsupply nutrientstopartsoftheeye.

Ciliary body:Locatedbehindtheirisandproducesaclearfluidinthefront oftheeye,aswellasassistingtheeyewithfocusingatdifferentdistances (i.e. accommodation).

Computed Tomography (CT):UseofX-raystoseeintothebody.

Cutaneous: Means that it is related to the skin.

Enucleation:Theremovaloftheeye.

External Beam Radiation Therapy (EBRT):Usesradiationoutsideofthebody to treat cancer.

Iris:Thecolouredpartoftheeyethatisreferredtoaperson’seyecolour.

Magnetic Resonance Imaging (MRI): Use of radio waves and powerful magnets

toseeintothebody.

Melanocytes: Skin cells that produce a dark pigment called melanin, which

is responsible for a person’s skin colour.

Melanoma:Acancerofmelanocytes.

Metastases: Spreading of cancer.

Ocular oncologist:Adoctorwhospecializesineyecancers.

Oncologist: A doctor who specializes in cancer.

Ophthalmologist:Adoctorwhospecializesintheeyeandisamedicaldoctor(MD).

Optometrist:Ahealthcareprofessionalwhospecializesintheeyeandisadoctorofoptometry(OD).

Plaques:Tinyplates.

Retina:Theinnersurfaceoftheeyethatsenseslight.

Tumour: A tissue mass made from an abnormal growth of cells.

Ultrasound:Usessoundwavestoseeinsidethebody.

Uvea or uveal tract:Themiddlelayeroftheeyethatincludestheiris,theciliarybodyandthechoroid.

Melanoma Network of Canada

1155 North Service Road W, Unit 11

Oakville, Ontario L6M 3E3

P: 905-901-5121 | www.melanomanetwork.ca

Copyright© 2015 Melanoma Network of Canada