The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center

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People profiles: Kendall Kayworth

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Doctor, DoctorFocus on lymphoma

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Intriguing links: diabetes and cancer

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Psychological andsocial distress of breast

cancer patients

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Fall

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Sharing hope, support and understanding with anyone diagnosed with cancer, regardless of where treatment is or was received.

Understanding your rights:Legal and insurance aspects of working through cancerby Lana Maciel

Job security. That’s what often springs to mind for recently diagnosed cancer patients when they consider how their disease might impact their employment status. Theyworry,“Howwillthisaffectmyjob?WillIbeabletokeepit?” Theanswer,inmostcases,isthatyoucannotloseyourjobjustbecauseyouhavecancer. UndertheAmericansWithDisabilitiesAct(ADA),youcan’tbefiredordiscriminatedagainstbecauseofadisability.Cancermaybeconsideredassuch,onacase-by-casebasis.Itdependsonhowyourconditionortreatmentaffectsyouandyourabilitytowork. Thedecisiontotellanemployeryouhavecancermaybedifficult,butifthediseaseandtreatmentaresevereenoughtoaffectyourabilitytodothejob,suchdisclosureisnecessarytogainthelegalprotectionsoftheADA. Whetherthedisabilityisobviousornot,themainADAprotectionsdon’ttakeeffectuntiltheemployerisinformedofthedisabilityandthefactthatareasonableaccommodationisrequired.

Reasonable accommodations help patients return to ‘new normal’ UndertheADA,patientswhoreturntoworkhavearighttoaskforreasonableaccommodationsfromtheiremployers.Thesemayincludeachangeinthephysicalworkenvironment,havingamoreflexibleworkschedule,telecommutingortakingextendedleave. Iftheemployeeasksforreasonableaccommodationsandcanstillperformtheessentialjobfunctions,thatpersonisprotected.However,theemployerwilldecidewhichaccommodationsaremostreasonableandhowtheywillbemet.Forexample,ifanemployeerequestssomethingandtheemployercanfindasimplerorlessexpensivewaytomaketheaccommodation,that’sacceptable.

Staying protected through medical leave Onceyou’vereturnedtoworkafteracancerdiagnosis,youmaystillneedtimefortreatmentortherapy.Thismayconflictwithworkschedules,oryoumayfeeltoofatiguedtoworkatall. Fortunately,takingtimeoffformostcancertreatments,regulardoctor’sappointmentsorrecoveryfromillnessisunlikelytocostyouyourjob. TheFamilyandMedicalLeaveAct(FMLA)protectsyou. Underthislaw,employeesandcaregiversreceiveupto12weeksofunpaidmedicalleaveeachyear,withanoptiontosubstituteaccruedvacation,sickleaveorotherpaidtimeoff.Youmayusethetimetodealwithyourownseriousmedicalconditionortocareforaseriouslyillspouse,parentorchild. ButtheFMLAhaseligibilityrequirements.Youmusthaveworkedatleastoneyearandaminimumof1,250hours,andyouremployermusthave50ormoreemployeeswithin75milesofyourworksite.

Exploring federal laws and protections Becausepatientsneedhealthcarecoverageduringtreatment,unemploymentissimplynotanoptionformany.Fortunately,therearedisabilityinsurancepoliciesthatcanhelpcoverthecostsofdoctors’visitsandprovideshort-andlong-termbenefits. Ifyoulosehealthinsurance,thereareseveraloptions,includingthecontinuationcoverageprovidedbytheConsolidatedOmnibusBudgetReconciliationAct(COBRA),HealthInsurancePremiumPayment(HIPP)programsandtheHealthInsurancePortabilityandAccountabilityAct(HIPAA).

Which is right for you? Ifyoulosegroupcoveragebecauseyouloseyourjob,reduceyourhoursorenrollinMedicare,COBRAplansallowyoutomaintainthatpolicywiththesameprovidersandprescriptiondrugcoverage.ButCOBRAisexpensive—upto102percentoftheindividualemployeerate. Thoughnotavailableinallstates,HIPPplanshelpyoucontinueprivatehealthcoveragewhilethestatepaysinsurancepremiumsifyoucan’taffordthem. AndwithHIPAA,whichguaranteesaccesstohealthinsuranceandtheabilitytocarryitovertoanotherjob,you’reprotectedaslongasyouapplywithin63daysofabreakinhealthinsurancecoverage. Lookingforadditionalhelpandresources?ThewebsiteofthenonprofitCancerandCareersorganization,atwww.cancerandcareers.org,isfullofpracticalinformationforpatients,caregivers,employersandhealthcareprofessionalsaboutcareerconsiderationsafteracancerdiagnosis.Anotherresource,fromtheTexasYoungLawyersAssociation,maybefoundatwww.tyla.org/projects/legal-guide-for-cancer-patients.YoucandownloadacopyoftheguideinEnglishorSpanish,orrequestthatonebemailedtoyou.

In the Winter 2011 issue of Network, we’ll wrap up our series on working through cancer with reader response to the stories. E-mail mbrolley@mdanderson.org to share yours.

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Sherecallswhenoneofherphysicianstalkedtoheraboutthechancethatthecanceranditstreatmentmightaffectherfertility. “ThatwasthefirsttimeIcried,”shesays.

Grateful for recovery and health Nowhealthyandhappy,Kayworthcreditshermedicalteam,herfriendsandherlovingfamilyforherrecovery. She’sespeciallygratefultohermom,Deana,whostayedwithherinHoustonduringthelongmonthsoftreatment. “Icouldn’thavedoneitwithouther.Thatgoesformyentirefamily,butshereallytookcareofme.Shewaswithme24/7.” Toshareherexperiencewithotheryoungpatients,KayworthjoinedtheAndersonNetworkTelephoneSupportLine. “Iliketalkingtopeopleintheir20sand30s,”shesays.“It’sanagegroupthathasn’tbeenreached.” SettograduatefromBaylor’snursingprogramintwoyears,shehopestobecomeanursepractitioneroraclinicalnursespecialist. Shealreadyknowsshe’llhaveaninstantconnectionwithherpatients. “Ninety-eightpercentofthemedicalstaffhavesympathyforthepatients—butIhaveempathy,”shesays.

To become a telephone support volunteer or to be connected with another caregiver or survivor, call 800-345-6324 or 713-792-2553, or use the online contact form at www.mdanderson.org/andersonnetwork.

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People profilesAttuned to survivors

Burkitt’s lymphoma survivor uses experience to help others

by Mary Brolley

Kendall Kayworth always knew she wanted to become a nurse — in fact, an oncology nurse. Her only concern was that she wouldn’t be able to relate to cancer patients.

Sheneedn’thaveworried. In2008,KayworthwasstudyingabroadinArgentinawhenshenoticedthatalymphnodeinherneckhadbecomeenlarged.Whenitdidn’tshrink,the20-year-old’sparentsinDallasbecameconcernedenoughtoflyherhomeformedicalattention. SoonshewasdiagnosedwithBurkitt’slymphoma,anaggressivetypeofB-cellnon-Hodgkin’slymphomathatoccursmostofteninchildrenandyoungadults. ShereceivedtreatmentatMDAndersonwithhyper-CVADandrituximab—apotentchemotherapyregimengiveninthehospitalabouteverythreeweeks.Itcombinestherituximabwithcyclophosphamide,vincristine,Adriamycin®anddexamethasoneforoddcyclesandwithhigh-dosemethotrexateandcytarabineforevenones. Despitethecancer’saggressivenature,Kayworthsaysherphysician,DeborahThomas,M.D.,associateprofessorintheDepartmentofLeukemia,quicklyreassuredher. “ShesaidIhadagoodprognosis—thatthiswasjustabumpintheroad,”Kayworthrecalls. Asecond-yearstudentatBaylorUniversity’sLouiseHerringtonSchoolofNursing,shecompletedanursingexternshipthissummeratMemorialSloan-KetteringCancerCenterinNewYork.Sheworkedonaleukemia/lymphomafloor. “I’veseenpatientswhenthey’renewlydiagnosed.They’reinshock.It’sstillsonew,”shesays. Acoupleoftimesshetoldthemthatshe,too,isacancersurvivor. “Iunderstandifthey’rehavingtroublesleeping,orwithsideeffects.Iletthemventiftheyneedto.” Herexperience—ofhavingherlife“derailed”forayeartoundergocancertreatment—makeshermoreawareofyoungcancerpatients.

non-Hodgkin’slymphomas,andsomegrowslowly,whereasothersgrowrapidly.

What types of targeted therapies are being used to treat Hodgkin’s and non-Hodgkin’s lymphomas?

Onepromisingareaisthedevelopmentoftargetedtherapieslikeproteasomeinhibitors,whichworkwithoutdamagingaperson’sDNA.Instead,theyblocktheproteinsthatDNAproduces.Proteasomeinhibitorsaffectmalignantcells,sotheydie,buthealthycellsarenotassignificantlyaffected. Othernewdrugs,includingmonoclonalantibodiesandimmunomodulatoryagents,alsohavegreatpotentialtoimprovethelivesoflymphomapatients.Monoclonalantibodiesattachprimarilytoproteinsonthesurfaceofcancercellsandcauseanimmuneresponseagainstthesecells.Immunomodulatoryagentstendtoaffectmanyofthenormalcellssurroundingthecancercells,suchastumorbloodvessels,toblocktheirgrowth.

Why is MD Anderson’s Lymphoma Tissue Bank so important?

AtMDAnderson,lymphomapatientsmaydonatepartoftheirbiopsiestoourLymphomaTissueBank.It’sbeeninoperationabout2½years,andourresearchisreallyexpanding. MycolleagueSattvaNeelapu,M.D.,hasrecentlyidentifiedanimportantproteinthatcausesimmunesuppressionbypreventingantitumorcellsfromkillingcancercellsinlymphomatissues.SowebeganatrialwiththesupportoftheNationalCancerInstitutetotestanantibodydesignedtostoptheimmunesuppressionandallowtheantitumorcellstokillthetumorcellsinpatientswiththesediseases.Inanotherstudy,we’vetestedanewdrugontissuesstoredinthetumorbankandhavefoundittobehighlyeffectiveincertainkindsof

lymphomas,butnotinothers.

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Doctor, DoctorFocus on lymphoma

We asked Fredrick Hagemeister, M.D., professor in the Department of Lymphoma and Myeloma, about lymphomas, promising new treatments for this group of cancers and how MD Anderson’s Lymphoma Tissue Bank is making a difference in research.

What are lymphomas?

Lymphomasarecancersofthebody’slymphocytes,atypeofwhitebloodcellofwhichtherearebothBcellsandTcells.Afterthesecellsbecomemalignant(cancerous),theycaninvadeotherorgans. B-celllymphomasarerelativelycommonintheUnitedStatesandEurope,buthavemanydifferentwaysofappearinginpatients,andareclassifiedbytheirappearanceunderthemicroscope.Theymayoccurintheyoungandtheold,anddependingontheirgeneticmakeup,canbefast-orslow-growing.Manycanbecuredwithchemotherapy,withorwithoutradiationtherapy. T-celllymphomasarerelativelyuncommonintheUnitedStates,andaremoredifficulttocontrolthanareB-celllymphomas,makingthedistinctionbetweenthesetwolargecategoriesimportantfordecisionsregardingtherapy.

What’s the difference between Hodgkin’s and non-Hodgkin’s lymphoma?

AllsubtypesofclassicalHodgkin’slymphomaexhibitaspecifictypeofabnormalcellcalledaReed-Sternbergcellthatshouldbepresentincorrectcombinationswithothernon-cancercellsinorderforapathologisttocallthediseaseHodgkin’slymphoma.Ontheotherhand,non-Hodgkin’slymphomashaveawidevarietyofdifferentcellspresent,andusuallymostofthecellsinapatient’stissuebiopsyconsistofthesemalignantcells,whichhavespecificproteinsontheirsurfacesthathelpinnamingthem.Thereareover30typesof

Fredrick Hagemeister, M.D., answers more questions about lymphomas in Network’s online version. Check it out at www.mdanderson.org/publications/network.

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Patientsreferredtotheprogramreceiveeducationaboutdiabetesandglucosemonitoring,counselingondietandexercise,andadoseofreassurancethatdiabetescanbemanaged. “Itellthem,‘We’llhelpyoucontrolyourdiabetesduringtreatmentandbeyond,’”Bradysays. Newlydiagnosedcancerpatientswithhyperglycemiaordiabetesgetalotofattentionfromthestaff.“Weknowtheyhaveincreasedmortalityjustbecausetheyhaveacomorbidity,”shesays. “Patientscanalsoexperiencesteroid-inducedhyperglycemia,soweneedtomonitorforthisinpatientsreceivingsteroids,”shesays. Meanwhile,recentstudiesindicatethatthecommonlyprescribeddiabetesdrugmetforminisassociatedwithalowerriskofcertaincancers. Couldtherelationshipbeassimpleasoverlappingpopulations?Riskfactorsforbothdiseasesincludeadvancingage,beingoverweightorobese,physicalinactivityandsmoking.Evenifthisisthecase,diabetesandobesityareincreasingrapidlyintheUnitedStates,soaddressinghowdiabetesmaybepreventedormanagedisacrucialtopic. Mostimportant,Bradysays,isanemphasisonthemaintenanceofgoodgeneralhealthsothepatientcanundergotherigorsoftreatmentforcancer.

‘A measure of control’ Asconsensusmountsthatthetwoconditionsarelinked,thebestadviceforpeoplewithdiabetesfacingcanceristowatchbloodsugar,stayasactiveaspossible,eatahealthfuldiet,takemedicationsasprescribedandreducestress. And,whethertheyhavecancerornot,allpeoplewithdiabetesmightbewisetodiscusstheirriskofcancerwiththeirphysician. Bradysaysthat,despiteundergoingrigorouscancertreatment,manyofherpatientsareeagertobecomevigilantabouttheirbloodsugar. “Somepatientswillreallyfocusonthis,”shesays.“Theyexercise,watchwhattheyeat,taketheirmeds.Itgivesthemameasureofcontrol.”

Intriguing links between diabetes and cancer

by Mary Brolley

Cancer and diabetes have a complicated relationship.And with an estimated one in five cancer patients also facing diabetes, it’s important to try to sort this out.

Diabetesissuspectedofincreasingtheriskofcertaintypesofcancer. Ontheotherhand,certaintypesofcancerandcancertreatmentsmaycauseorworsendiabetes. Andmetformin,acommontreatmentfortype2diabetes,hasbeenassociatedwithalowerriskofcancerinsomestudies.Soit’snotsurprisingthatresearchersinendocrinologyandoncologyareincreasinglyfocusedonthesimilaritiesbetweenthetwoconditionsandwhatcanbelearnedbycombiningtheirefforts. Earlierthisyear,theAmericanDiabetesAssociationandtheAmericanCancerSocietyissuedajointpaperonthetwodiseases,agreeingthataccumulatingevidenceindicatesthatpeoplewithdiabetesaremorepronetocertaincancers. Diabetesseemstobepresentbeforetheadventofcolorectalandprostatecancer,andpeoplewiththediseasearemorelikelytogetpancreaticcancer. Diabetesisalsolinkedtoincreasedriskforbreastandendometrialcancers. Thereisacertaininevitabilityaboutthelinkingofthetwodiseases,saysVeronicaBrady,advancedpracticenurseintheDiabetesProgramintheDepartmentofEndocrineNeoplasiaandHormonalDisordersatMDAnderson. “Bothdiseasesoccurmoreofteninolder,physicallyinactive,overweightorobesepeople,”shesays.“Wemustaddressit,becauseeventuallythepopulationsaregoingtocross.”

Acknowledging the connection MDAnderson’sDiabetesProgramwascreatedtoaddressthefactthatthediseasescoexist.Preliminaryresearchattheinstitutionshowedthat,amongpatientswithdiabetesandpancreaticcancer,thosewithhigherbloodsugarhadworseoutcomes.

theymightbecomeanxiousaboutmakingtherightchoicesandjugglingresponsibilitiesoveralongperiodoftime. AtMDAnderson,physiciansandhealthcareteamsdotheirbesttomakesurepsychologicalandsocialissuesareaddressedasthoroughlyasmedicalissues.Thesurvivorshipclinicstakethisintoaccount,too. Littonhaslearnedtoaskquestionsaboutpsychologicalandsocialissuesevenifwomendon’tbringthemup.“Imightsay,‘Manywomenaredepressed.Isthatsomethingyou’redealingwith?’” Iftheyaredepressedoranxious,sherecommendsthattheyarrangeanappointmentwithsocialworkersintheDepartmentofSocialWorkoradvancedpracticenursesintheDepartmentofPsychiatry.

Managing anxiety in the information age Breastcancertreatmentshavechangedagreatdealinthelast50years,whenradicalmastectomieswereroutineandcausedalifetimeofphysicalproblems,suchaslossofmobility,painandlymphedema. Today’ssurgeriesarelessdisfiguring,butthecombinationofdifferenttreatmentmodalitiesmaycausenewsideeffects.Survivorsoftenfaceissueslikethreatstobonehealth,hotflashes,earlymenopause,chronicfatigueanddecreasedlibido.Somuchmoreisnowknownaboutaperson’sindividualtumor,andthisaddsanotherlayerofconcernforpatients. Anxietyandworrymaybeespeciallyacuteforwomenwho’vegoneinandoutoftreatmentbecauseofrecurrences. CherylJollyofSugarLand,Texas,wasdiagnosedwithastageIIbductalcarcinomainlate2006.Sherememberslearningthathertumorwasofthe“triple-negative”subtype,meaningthatitwasclinicallynegativeforthehormonesprogesteroneandestrogenandforHER2.Shequicklydiscoveredthatthismadeseveralpromisingtherapiesineffective. “TheytellyounottoGoogle,butIdon’tcarewhoyouare,you’regoingtodoit,”saysJolly,themotheroftwoyoungsons.“Andit’sterrible,lookingthroughallthatstuff.” NowinaclinicaltrialundertheleadershipofLittonforpatientswithtriple-negativedisease,Jollyisclosetohermedicalteamandfeelsfreetobeopenwiththemaboutherfeelingsofstress,anxietyordepression. BothLittonandMorrowtrytoreassurepatientsandsurvivorsofanyagethattheirfeelingsareunderstandableandthatthehealthcareteamisreadytohelp. “Iadvisethemtoreachouttoothers,”Littonsays.“ThatmightmeantalkingtoaPinkRibbonvolunteer,joininganother

supportgrouporvolunteeringthemselves.”

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Psychological and social distress among breast cancer patients and survivors

by Mary Brolley

After the shock and fear of a breast cancer diagnosis, and once the often-difficult treatment is complete, patients expect to resume their lives and routines with a clear sense of gratitude and relief.

Wait—notsofast. Whilecertainsideeffectsofbreastcancertreatments—forexample,lymphedemaandthelossofmobilitythatmaybeexperiencedbythosewho’velostaxillarylymphnodes—arewelldocumented,thereareotherreactionsthatarelessexpected. PsychologicalandsocialdistressisaresponsethatJenniferLitton,M.D.,assistantprofessorintheDepartmentofBreastMedicalOncologyatMDAnderson,seesoften.Therearetwodistinctsetsofemotionalreactions:onejustafterdiagnosis,oneaftertreatmentends,shesays. “Atfirst,somewomenareangryorindenial.Theyask,‘HowcanIhavebreastcancer?Ihavenofamilyhistoryofit,’”shesays.“Itellthemit’sOK—evenappropriate—tofeelthatway.” Foranumberofwomen,newworriesmayappearaboutsixmonthsaftertreatmentends.Aftermonthsoffocusongettingthroughnomatterwhat,feelingsofanxietyanddepressionmaysurface. Womendiagnosedintheir30sand40smaybemostlikelytosufferpsychologicalandsocialdistress.Theymayworryaboutcaringforyoungchildrenorthatthey’llbecomeinfertileasaresultofchemotherapyorradiation.

One issue is front and center “Fearofrecurrence,”saysP.K.Morrow,M.D.,assistantprofessorintheDepartmentofBreastMedicalOncologyanddirectoroftheBreastCancerSurvivorshipClinic.LikeLitton,Morrowworkswithmanyyoungerbreastcancerpatients. “Theymayalsohavefinancialworries,sufferfromfatigueorbeconcernedaboutinfertility.Butfearofrecurrenceisthemainthing,”shesays. Addtothatthefactthatwomenareincreasinglyinvolvedinchoicesabouttheirtreatment,andit’sunderstandablethat

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Page 8 Briefs

Being diagnosed with cancer in your late teens, 20s or 30s presents a whole different set of issues than those faced by older or younger survivors. It can seem like a lonely world where no one understands what you’re going through.ProgramslikeCancer180,theCancerSurvivorMessageBoard,WarmNet,theAdolescentandYoungAdultProgramandMDAnderson’sYoungCancerConnectionFacebookpageaimtoprovidesupportandconnectiontootheryoungadultsaffectedbycancer.

Tolearnmoreabouttheseprograms,checkoutwww.mdanderson.org/andersonnetwork,www.mdanderson.org/ayaandwww.facebook.com/youngcancerconnection.Callusat713-792-2553or800-345-6424.We’rehereforyou.

The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center.

Address changes should be sent to: Mary Brolley The University of Texas MD Anderson Cancer Center Communications Office – Unit 700 6900 Fannin St. Houston, TX 77030-3800 Phone: 713-792-0658 Fax: 713-563-9735 E-mail: mbrolley@mdanderson.org

Articles and photos may be reprinted with permission.

Susan French, Executive Director, Volunteer Services Debbie Schultz, Assistant Director, Volunteer Services/ Anderson Network Mary Brolley, Writer/Editor, NetworkLana Maciel, Contributing Writer Gini Reed, Graphic Design Pamela Lewis, Chair, Anderson Network

© 2010 The University of Texas MD Anderson Cancer Center

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