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MakingYourTreatmentSummaryandSurvivorshipCarePlanWorkforYouLeslieHeron,RN,BSN,MN,APRN,FNP-BC,NC-BC
9th AnnualPierceCountySurvivorshipDayAugust9,2017
Objectives
• LearnaboutTreatmentSummaryandSurvivorshipCarePlans
• Understandwhythisdocumentisrecommended forcancersurvivors
• LearnhowtouseaTreatmentSummaryandSurvivorshipCarePlantoadvocateforyourself
WhoareSurvivors?“…anyonewhohasbeendiagnosedwithcancerfromthetimeofdiagnosisthroughthebalanceofhisorherlife.”
AmericanCancerSocietydefinition
WhatisSurvivorship?Addressingtheuniqueneedsofsurvivorsafteractivetreatmentends
TransitiontoSurvivorship
WhyPlanforSurvivorship?• Therearemorepeoplesurvivingcancer– Screeningtestsforcancerarebetter– Earlierscreeningishappening–Moreeffectivetreatmentsareavailable
• Cancersurvivorsarelivinglonger– Bothchildhoodandadultsurvivorsarelivinglonglivesaftertreatmenthasbeencompleted
But…
…TherecanbeLongTermandLateEffectsMedicalProblems:
ü Heartdiseaseü Fatigueü Painü Osteoporosis/osteopeniaü Hypothyroidismü Prematuremenopauseü Pulmonaryfunctionü Lymphedemaü Urinaryincontinenceü Infertilityü Neurologicproblemsü GI(bowels,bloating,acidreflux)ü Dentalimpairmentsü Recurrenceü Riskof2nd cancersü Acceleratedaging
EmotionalandFunctionalConcerns:ü Memorylossü Restrictedsocialandphysical
activitiesü Fearofrecurrence/livingwith
uncertaintyü Muscleandjointstiffness,weakness,
crampsorpainü Sexualdysfunctionü Intimacy/relationshipissuesü Distressandworryü Jobloss/Joblockü Rolechangesathomeü Schoolconcernsü Insuranceproblemsü Financialconcernorcrisisü Sleepdisordersü Cognitiveprocessingdisruption
So,CancerSurvivorsSpokeUp!
IOMReportIdentifiedSurvivorshipNeeds:
1. Everysurvivorshouldreceiveatreatmentsummaryandcareplanattheendoftreatment.
2. Prevention,surveillanceanddetectionofnewandrecurrent cancers.
3. Prevention,surveillanceanddetectionforconsequences ofcanceranditstreatment.
4. Coordination betweenspecialistsandprimarycareproviderstoensurethatsurvivorhealthneedsaremet.
IOM: From Cancer Patient to Cancer Survivor: Lost In Transition (2006)
Standard3.3:SurvivorshipCarePlan• Providedtoyouattheendoftreatment
• PreparedbyOncologyteam• Contains– Diagnosisandalltreatments– Surveillanceandscreening– Actualandpotentiallateeffects
• Andwhattolookfor
– Healthylifestyleinformation– Yourhealthcareproviders– Resources
Thestandardrequiresthatthesurvivorsbe,“providedwithacomprehensivecaresummaryandfollow-upplanthatisclearlyandeffectivelyexplained.”
https://www.facs.org/publications/newsletters/coc-source/special-source/standard33
TreatmentSummaryGoal
• Increaseknowledgeofyourdiagnosisandthetreatmentyouhavereceived
• Assisttransitionbacktoprimarycareandotherhealthcareproviders
SurvivorshipCarePlanGoal• Increaseknowledgeforpatientandproviders
• Recommendhealthscreeningsandcancersurveillance
• Promoteahealthylifestyleandillnessprevention
WhatMightaTreatmentSummaryandCarePlan
LookLike?
DiagnosisandMedicalHistory
TreatmentSummary…
SurvivorshipCarePlan
Follow-UpPlan
Follow-UpPlan
Now…Let’sSeeHowaTreatmentSummaryandCarePlanCan
WorkforYOU!
Mike’sdentisthadbeenseeinghimforafewyears,andwassurprisedMikehadsomanynewcavitiesandrecedinggums.Mikebrushed,flossed,cameinfordentalvisitsregularly.WhatMike’sdentistdidn’tknowwasthatMikehadchemotherapyandradiationforprostatecanceraboutayearago.
MikecameinforaSurvivorshipClinicvisitandfinallyunderstoodwhatwasgoingon,andwhy!
WhenMikebroughthisTreatmentSummaryandCarePlantoadentalvisit,hisdentistwasabletocomeupwithabetterpreventativeplan,nowMikeiscominginforcleaningsevery4months.
Loishadcoloncancerlastyear.Shehasdonephysicaltherapyforthepastfewmonthstogetherstrengthbackaftersurgery,chemoandradiation.Shehasbeengettingstronger,butherlegsfeel“heavy”aftershetakesalongwalkorafterbeinginthecaralongtime
Loistriednotexercisingforafewdaysinarow,buthersymptomsdidn’tchange.Nowherpantsfeeltighteronherlegs.Whatisgoingon?
ShereadbackthroughherSurvivorshipCarePlanandtookitinwithhertoamedicalvisit.HernursepractitionerrealizedLoishadlymphedema!Loiswentbacktophysicaltherapytohavelymphedemamassageandtobefittedwithcompressionstockings.Sheisdoingherownmassagenowandisbacktoexercisingwithoutproblems.
KarlwastreatedinhisteensforHodgkinlymphoma,andnowisinhismid-40’sandhasbeenhealthyandwell.Hehasputonalittleweightandwantedtogetbackinshape,butfoundhewasfeelingmorefatiguedafterexercise.Hethoughtheshouldfeelbetterafterexercise!Hedidnothaveaprimarycareprovider,buthe’dheardaboutSurvivorshipClinicfromhissupportgroup.
AfterreviewinghisTreatmentSummary,KarlrealizedhehadbeentreatedwithDoxorubicin.Thischemotherapymayhaveputhimatriskforheartproblems,evenyearsaftertreatment.Hehasgottenintoseeaprimarycareproviderforaphysicalexamandbloodwork,andisscheduledforanechocardiogramtolook.
Sandrahadatransplant8yearsago,andshehadbeendoinggreat.Shegotinforroutinecheckups,hadbloodtestsdoneyearly,andhadroutinemammograms.Thenshestartedfeelingtired,andnoticedherhairwasgettingthinner.Thenherfatiguegotworseandhershouldersfeltachy.Shebegantoworrythathercancermayhavecomeback!
Whenshewentintoseeherprimarycareprovider,theylookedoverherTreatmentSummaryandCarePlantogether.Sandrahadbothchemotherapyandradiationduringtreatment.Herdoctorrealizedtheyhadn’tcheckedherbloodworkforthyroidhormonelevelswithheryearlylabslastyear.
Sandra’sexamandtestsallcamebacknormal,exceptherthyroidlabs.Shewasputonthyroidmedicationandisfeelinggreatagain.
• AskyourOncologyteamforaTreatmentSummaryandSurvivorshipCarePlanofyourown!
• AskifyourcancercenterhasaSurvivorshipClinic
• CometotheFredHutch/SCCASurvivorshipClinic
TreatmentSummary &CarePlans
Or…MakeYourOwnTreatmentSummary!• LIVESTRONGTM CarePlanwww.livestrongcareplan.org
– Patient-orientedtool– Comprehensiveindividualizedlistofrecommendationsspecificto
primarycancerdiagnosis&treatmentreceived– PoweredbyPennMedicine’sOncoLink
• JourneyForwardwww.journeyforward.org
– Providers&Patients– Collaborativeeffortof:
• NationalCoalitionforCancerSurvivorship• TheUCLACancerSurvivorshipCenter,Wellpoint,Inc.,Genentech
MakingYourCarePlan
Atreatmentsummaryandsurvivorshipplanarethepiecesthathavebeenmissinginmycaresincefinishingtreatment.
Asurvivorshipcareplanistheformerlymissingsteptohelpussurvivorsregainourdignityandconfidencemovingforwardwithaplanwithoureyesopen.
Aftermycancertreatment,IknewthereweretestsIneededandillnessIwasatanincreasedriskfor,butIdidn’tknowthespecifics.NowIknowexactlywhatIneedtodotobeashealthyaspossibleinthefuture.
Thankyou!
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