Network - Winter 2011

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

network

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People profiles: Carrie Simpson

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Doctor, DoctorFocus on adolescents and

young adults

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Facing up

to body image issues

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Genetic testing:what patients should know

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Winter

’11

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

Working through cancer: readers respond by Mary Brolley

The first time she was treated for ovarian cancer, Debbie Netterville wasn’t working. This had its advantages, to be sure. Shecouldrestwhenshewastired,forone. Butthereweredownsides,too,shesays.“Ihadlotsoftime,soIspentitresearchingontheInternet,”sheadmits.“Andthestatisticsweredepressing.Finally,myhusbandScottsaid,‘Youstayoffthere.’” Ayearago,whenNettervillediscoveredthathercancerhadrecurred,shewasworkingparttimeasabusmonitorataschooldistrictinthegreaterHoustonarea.SheaccompaniedScott,aministerandpart-timebusdriver,onhisdailyruns. Shedidn’twanttogiveupherjob,whichprovidedinsurance.Andbecauseofherearlierexperience,shehopedworkingwouldalsogiveherawaytofeelproductiveandensurethatlesstimewasspentsurfingtheInternetorworrying. Whenour“WorkingThroughCancer”seriesbeganlastsummer,weaskedforandreceivede-mailsfromthetrueexpertsonthesubject—ourreaders.SometoldstorieslikeNetterville’s—ofworkbeingawelcome

distractionfromundueworry,ofaccommodatingbosses,ofcolleagueseagertopitchinwithvarioustypesofsupport. Others,though,expressedfrustrationwiththedifficultiesofworking(orreturningtowork)whiledealingwithfatigue,longhoursinphysicians’waitingroomsandhassleswithschedulingappointments.

For some, working through treatment is impossible Oursecondarticle,inthefallissue,dealtwithlegalandinsuranceconsiderationsofworkingthroughcancer. Inresponse,SuzanneAschoffofMilwaukee,Wis.,wrotetoremindusthatforsomecancerpatients,returningtoworkisnotanoption.HerlatehusbandLeereceivedastemcelltransplantin2008—hisonlyoptionagainstacutemyelogenousleukemia.Unabletoreturntoworkbecauseofhissusceptibilitytoinfection,heappliedforandreceivedassistanceundertheFamilyandMedicalLeaveActandSocialSecuritydisability. Hiscoworkerspitchedintocoverhisresponsibilitiesformonths,yethewaseventuallyfired.Thisplungedhimintoaclinicaldepressionthatmaderecoveryevenmoredifficult,andhedied12monthsafterthetransplant. “IknowMDAndersonhasmadegreatstridesintreatingcancerofalltypes,”Aschoffwrote.“Buttheprotectionlawshavenotkeptpace.Assuringpatientstheyareprotecteddoesthemadisservice.”

It takes a village MariaGarciaVorajakkomol,whoteachesEnglishasasecondlanguage,underwentchemotherapyforlivercancerin2009.ShewrotetotellusaboutthesupportshegotfromtheschooladministrationandcolleaguesinherschooldistrictinruralsoutheastTexas. Becauseshefoundthatsheneededfourtofivedaysaftereachtreatmenttorecover,herprincipalandtheschooldistrictofferedherleavefromthecommunalsickpool.Anaideassignedtocoverherclassroomalsoprovedinvaluable. Atwork,fellowteachersinsistedoncoveringheroutdoorlunchdutytoprotectherfrominfection.“Workingwith

peoplewhocareandaresincerelyattunedtothedifficultiesinmysituationgavemeatruerespectforthepowerofcommunity,”shewrote. “I’mblessedtobeworkinginasmalltownthatpullstogethertohelpsomeoneinneed.”

Coworkers helpful throughout recovery Nettervilleknowsshewasespeciallyluckytobeworkingwithherhusbandandcaretaker.“Scottreallywatchedoutforme.IfhesawIneededhelp,hewasrightthere.AndifIneededtorestwhenwewerehome,hemademeliedown.” Shealsoremembersthesupportanddailydistractionprovidedbythekidswhorodethebus.Theywatchedhergofromwearinga“halo”wigwithacapformanymonthstothewonderfuldaysheappearedhatless,revealingherownshort,curlyhair. Shealsocreditsherfaithwithhavingbeen—andcontinuingtobe—tremendouslyimportantindealingwithherillnessandtreatment. Heradvicetothosewithcancer:“Ifyoucanphysicallymanageit,work.Mentally,ithelps.” Sheremembers,also,thatassoonasScotttoldcoworkershercancerhadreturnedandshe’dhadsurgery,theystartedsendingmealshomewithhim.Somehadbeenthroughsimilarexperiencesandwantedtoshowtheirsupport. “Cancerpatientscameoutofthewoodwork,”shemarvels.

To see parts one and two of our series on working through cancer, check out www.mdanderson.org/publications/network.

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Scott and Debbie Netterville

Toremovethecancer,SimpsonunderwentchemotherapyatMDAndersontoshrinkthetumor,followedbysurgery,inwhichthreeofherribswereremoved.Twoyearslater,sheiscancer-free. ThoughSimpsonnolongerhasfulluseofthemusclesinherback,theDallasresidentandstay-at-homemomsaysshe’slearnedtoadjust. ShecontinuestospreadherpositiveattitudeandhopeasatelephonesupportvolunteerfortheAndersonNetworkandthroughherwebsite,Cancerbiographies.com,aresourceforpatients,survivors,caregiversandtheirfamiliestoobtaineducationalmaterialsandproducts,sharetheir“cancerbiographies”andofferencouragementtootherpatients. “Afterhavingcancer,younevergobacktothewaylifewas,”shesays.“Forpeopleexperiencingthischange,Iwantthemtoknowtherearemanyothersgoingthroughthesamethingandthey’renotalone. “Mywebsitereachespeopleallovertheworld,soIfeelIsurvivedforareason—tohelpothers.”

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

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People profilesKeeping a positive outlook by Lana Maciel

When cancer tried to bring Carrie Simpson down, she fought back not once, not twice, but three times with her best and strongest weapons — a positive attitude and an unshakable will.

You’dneverguessthatSimpson,31,hasenduredthelongandgruelingjourneyofcancerthreetimes.Throughchemotherapy,radiationandsevensurgeriestoremoveagrapefruit-sizedtumorfromherback,Simpsonsaysshealwaysmanagedtocountherblessings. “Somethingsinlifecouldmakeyoubitter,butyouhaveachoice,andImadethechoicetostaypositive,”shesays.“It’stheonlywayI’veeverlookedatlife.Ithinkthat’swhathelpedmegetthroughitall.” Simpson’sfirstdiagnosis—Hodgkin’slymphoma—camein1999whenshewas20.Acollegestudent,shekepthermindoffherconditionwithclassesandschoolactivities.Aftertreatment,shewentintoremissionforsevenyears. Butin2007,shelearnedthatcancerhadagaininvadedherbody. Thistime,Simpsonwasdiagnosedwithmalignantfibroushistiocytomasarcoma,adiseasethatmighthavebeencausedbyearlierradiationtreatments. Atumorwasremovedfromherback,butjustmonthslateranothertumorhadformedinthesamearea.Thisonewaslodgedinherribcage,sosurgeonshadtoremoveanareathesizeofafootball. Buteventhisdidn’tdampenSimpson’sspirits. “Ihadareallyhugesupportsystemofmyhusband,mom,dad,stepdad,brothers,andmyentirefamilyandnetworkoffriends,”shesays.“Duringthesecondoccurrence,Ihadmytwodaughters,BaileyandCara,whowere1½and3yearsold,andtheyalwayskeptmesmiling. “Iwasblessedtohavethemallthere.”

Nurturing hope in others

Carrie with daughters Cara (left) and Bailey.

survivorsandcaregivers,hasaspecialprogramcalledCancer180thatorganizessocialoutingsforAYAcancerpatients.Theygotoprofessionalsportingevents,cookingclasses,videoarcades,bowling—orjusthangoutatarestaurantorbar.Ithelpsthemrealizethey’renottheonlytwentysomethingswithcancer.

Are young adults open about their issues and their worries about long-term side effects?

Likemostpeopletheirage,AYAswithcancerarenotopenwitholderadultsabouttheirsexuality.Askingthemabouttheirrelationshipsiscrucialbecausetheyseldomvolunteertheinformation. Doctorsandnursesmustn’tassumeyoungadultpatientsknowtherisksassociatedwithtreatment,suchasdecreasedfertilityorotherlateeffects;it’sourresponsibilitytoeducatepatients.Weshouldalsoeducatepatientsaboutthescreeningstheyneedtomonitorforlong-termsideeffects,aswellaswhattheycandotominimizetheirrisks.

Is there resistance among this population to crucial follow-up screenings? If so, how do you deal with it?

Adherencetotreatmentandfollow-upcanbeasignificantissueinthisagegroup.Oncepatientsfeelbetter,theymaystoptakingmedicationsorcomingtoappointmentsbecausetheydon’twanttohavecancer. I’vefoundthebestapproachistoaskpatientsdirectlywhythey’renotadheringtothehealthcareteam’srecommendations.Theanswershaverangedfrombeing“tiredofhavingcancer”andwantingasenseofnormalcytonothavingthemoneytopayforparkingorprescriptions. Onceweknowwhattheissueis,wecangarnerresourcesfromMDAndersonandthecommunitytohelpthemstayontrack.

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Doctor, DoctorFocus on adolescents and young adults with cancer

We asked Anna Franklin, M.D., assistant professor in the Department of Pediatrics and medical director of the Adolescent and Young Adult (AYA) Program at MD Anderson, about the concerns of young adult (ages 15-39) cancer patients and survivors and how her team helps them cope.

What special issues do young adults with cancer face?

Beforeacancerdiagnosis,mostyoungadultshaveneverexperiencedamajorillness,muchlessalife-threateningone.Theytypicallyhaveasenseofinvincibility,andacancerdiagnosisimmediatelyforcesthemtoconsidertheirmortality. Aspartofnormaldevelopment,manyadolescentsandyoungadultsaretransitioningtoindependence.Suddenlycanceranditstreatmentforcemanyofourpatientstobecomecompletelydependentonothersagain.Theymayneedtomovebackinwiththeirparentsorhavesomeonetakecareofsimpledailyneedslikebathing,dressingandeating. Thesearemajorconcerns,butAYAsmayalsofaceotherissues,suchasalteredbodyimage,impairedfertility,asenseofisolation,depression,anxiety,littleornohealthinsuranceandunfamiliaritywiththehealthcaresystem.Theyalsoneedtofigureouthowtocontinuetheireducationorcareerdevelopmentwhilebeingtreatedforcancer.

How does your team help them address and deal with these issues?

WetrytohelpAYAscontinuetoleadasnormalalifeaspossible.Weencouragethemtocontinueasmanyoftheiractivitiesastheyfeeluptowhilethey’reundergoingtreatment.Andweencouragethemtospeakupandbetheirownadvocates.TheAndersonNetwork,whichprovidessupporttopatients,

Anna Franklin, M.D.

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Theprogram—thefirstinthenationtofocusonbodyimageissuesofcancerpatients—wascreatedtwoyearsagobyMichelleCororveFingeret,Ph.D.,assistantprofessorintheDepartmentofBehavioralScience. Sincethen,Fingerethasseen200patients,andthereareplanstoexpandtheprogram’sservices.Currently,80%ofherworkwiththeBodyImageTherapyServiceisfocusedonresearch,withtheremaining20%spentcounselingclients. Duringthesessions,patientscandiscussthepsychologicalandemotionalaspectsofcancerthatfewdoctorsaddressduringconsultationsandvisits. “Manypatientsareembarrassedoruncomfortabletalkingaboutbodyimage,”Fingeretsays.“Whenworkingwiththem,Ivalidatetheirconcernsabouttheirbody.Itellthemit’sOKtoworry,andit’sOKtocry;it’snaturaltofeelthatway. “Istronglyencouragecancerpatientstotalkwiththeirdoctorsaboutbodyimageissues.Thisisextremelyimportantbeforetreatmentsothey’llbebetterpreparedforwhattoexpectintermsofdisfigurementorfunctionalloss.Patientswithunrealisticbodyimageexpectationsenduphavingamuchmoredifficulttimeadjusting.”

Healing the whole person WhiletheBodyImageTherapyServicefocusesmostlyonheadandneckandbreastcancerpatients,Fingeretsaysshehopestoseetheprogramexpandtoallpatients. “Everycancerpatientexperiencesbodyimageconcerns,”shesays.“It’srelevantandapplicabletoall.” Fingeretsaysmostofherpatientsstrugglewithisolationbecausetheybecomeunhappywiththeirbodies.Throughcounseling,shehelpsthemregainsocialconfidence.It’sallpartofalargergoalformedicalprofessionalsatMDAnderson—treatingeverystageofapatient’scancerjourney. “Asweseeagrowingpopulationofcancersurvivors,it’simportanttofocusontreatingboththeillnessandthewholeperson,”shesays.“There’samovementtowardthatnationwide,andatMDAndersonaswell.”

by Lana Maciel

A cancer diagnosis brings many changes in a patient’s life — physical, emotional and mental. Patientsmaybecomeself-consciousabouthowcancerhaschangedtheirappearance,andthismayaffecttheirlifestyleorself-esteem.It’sadifficultadjustment,andonethatphysiciansrarelyaddressintheexamroom. EnterMDAnderson’sBodyImageTherapyService,aprogramtohelppatientsmanageandcopewithbodyimageconcerns,increasetheirself-confidenceinsocialsituationsanddiscusstreatmentdecisionsthatwillaffecttheiroutwardappearance. Forpatientswhosecancerscausedisfigurement,doctorsandcounselorshelpbydiscussingreconstructivesurgeryoptionsorbybetterpreparingpatientsforphysicalchangestheywillexperience.

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Theredflagsforhereditarypredispositionarefindingrelativeswhocontractedcancerbeforeturning50yearsoldand/orhadmorethanoneprimarycancer.Otherwarningsignsaremanyfamilymemberswiththesameorarelatedcancerandmultiplegenerationsaffected. Apositiveresultcarriesbigweightbecauseitmeansthepersonhasagreaterlifetimeriskofdevelopingcancer,anddoingsoatayoungerage. Thebestpersontotestislikelythepersonwithcancer,Arunsays.“Onceweidentifythemutationthatcausedhercancer,wecantestfirst-degreerelatives—mother,sisters,daughters—toseeiftheyalsocarryit.” AmongthemostcommonhereditarymutationsareBRCA1andBRCA2,whichhavebeenidentifiedasbreast-ovariancancersusceptibilitygenes. “Itcanbehelpfulforwomentoknowtheirgenestatusbeforebeginningtreatment,”shesays.“Forexample,awomanidentifiedascarryingoneoftheBRCAmutationsmightconsiderarangeofoptions,fromtreatmentfortheaffectedbreastandsurveillanceontheother,toaprophylacticmastectomy. “Andonceawomanknowsshehasthemutation,shecangetmoreintensivescreenings,includingthoseforovariancancer,earlier.” Thoughit’sherpassion—hercalling—Arunknowsthatgenetictestingisn’ttheanswerforeverycancerpatient.

Genetic testing: what patients should know

by Mary Brolley

When Banu Arun, M.D., explains her work, she starts with the basics. Anexpertingenetics—specificallythegenesinvolvedinmutationsthatraisetheriskofbreastandovariancancers—ArunisaprofessorintheDepartmentofBreastMedicalOncologyandco-directoroftheClinicalCancerGeneticsProgramatMDAnderson. First,shenotesthataperson’slifetimeriskofcancerisoneoutoftwoformen,oneoutofthreeforwomen.Toaddcontext,shemightaddthatin2010,anestimated1.5millionAmericanswerediagnosedwithcancer. Ofthosewhodogetcancer,only5%to10%willdosobyinheritingamutatedgene. Infact,nineoutof10peoplewhodevelopcancerdososimplybecausethey: • getolder, • fitintoahigher-riskcategoryduetosmoking,obesity oralcoholabuse, • haveapredisposingconditionsuchasHIVinfection,or • haveanycombinationofthesefactors. Still,forthesmallproportionofpatientsatriskofinheritingcancer,genetictestingisanareaofgrowingawarenessandinterest. Genetictestinginvolvestakingabloodsample.Itmaytakeseveralweekstogettheresults.Thoughsomepatientsworrythattestresultsmightbeusedagainstthem,HealthInsurancePortabilityandAccountabilityActprovisionsprohibitgroupplansfromusinggeneticinformationtodetermineeligibilityorestablishapreexistingcondition. Arunbelievesthatbeforedecidingwhethertoundergotesting,peopleshouldfirstspeakwithageneticcounselor. “They’respeciallytrainedtodoariskassessmentwithapatient,”shesays.“Anddecidingtoseeacounselordoesn’tmeanyouhavetogothroughtesting.They’lldiscussthebenefitsandlimitsofbeingtestedineachcase.” “Forexample,onlyabout10%ofbreastcancertypesareinherited.Therestarewhatwecall‘sporadic’—thatis,theyoccurbecauseofaconfluenceoffactors.” Butwhatifthereisafamilyhistoryofcancer?

First, make a family tree Sketchoutyourbirthfamily,notingwhetheranyonewasdiagnosedwithand/ordiedofcancer,andatwhatage.Thengobackasfarasyoucan,fillinginasmanydetailsaspossibleonearliergenerations.

Banu Arun, M.D.

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Limits, benefits of testing Thetestscanonlyprovideinformationaboutaperson’srisksofdevelopingthistypeofcancer. Notallofthegenesassociatedwithhereditarycancerhavebeenidentified.Notallgenemutationsmaybedetectable.Resultscanbeinconclusive.Andcosts,whichrangefromhundredstothousandsofdollars,mightnotbecoveredbyinsurance. Butforsomepatients,thetestsprovidecrucialknowledge.Thosewhotestpositiveforaknowncancer-causingmutationmightfindthattheirinitialdisappointmentanddreadarefollowedbyaresolvetomeettheriskshead-onwithincreasedvigilanceandenhancedscreening. Infamiliesthatcarrythemutatedgene,thosewhotestnegativearerelievedthattheirhealthandthatoftheirchildrenislessatrisk. ArunsaysthateventheseclientscontributetotheClinicalCancerGeneticsProgram’sresearch,whichincludesidentificationofnewchemopreventiveagentsandseveralPhaseIIpreventionstudies. “Anumberofyoungwomenwetestagreetoletuskeeptheirbloodsamplesforresearch.We’resothankfulforthat,”shesays.

Page 8 Briefs

The22ndannualAndersonNetworkCancerSurvivorshipConferenceendedwithquiteabang.HeldSept.24-25,2010,theconferencebroughtcancerexpertsfromMDAndersontodeliverenlighteningandempoweringmessagestonearly500cancersurvivors,caregiversandmedicalprofessionals. KeynotespeakerLorenzoCohen,Ph.D.,professoranddirectoroftheIntegrativeMedicineProgramatMDAnderson,advisedparticipantstotaketheirhealthintotheirownhandsbyexercisingmoreoften,switchingtoaplant-baseddiet,avoidingenvironmentalcontaminantsandreducingstressbymeditating,practicingyogaandtryingotherformsofcomplementarymedicine. Theconference’srousingconclusionwascourtesyofTheDrumCafé,whichusesmusicasacommonlanguagetocelebratesuccessesandtacklechallenges. Therewerenospectatorsduringthisperformance—eachattendeewasprovidedadrumandfollowedtheleadfromthestage.

Mark your calendars — the next Cancer Survivorship Conference will be held Sept. 16-17, 2011.

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

© 2011 The University of Texas MD Anderson Cancer Center

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