Late Effects after Cancer:Late Effects after Cancer:Survivorship Care PlanningSurvivorship Care Planning
Karen Syrjala, PhDKaren Syrjala, PhDCoCo--Director, Survivorship ProgramDirector, Survivorship Program
SURVIVORSHIP PROGRAMa member of the
Healthy for the Holidays:
Surviving cancer: the big picture
What are common problemsafter cancer treatment
Planning for your care after treatment
TODAYTODAY’’S TOPICSS TOPICS
Take charge of what you control
to overcome holiday stress
and make the most of your life!
Knowing and doing something you
control always makes you feel better.
Knowledge is PowerKnowledge is Power
Cancer Survivor = “From time of diagnosis.”Survivorship Program: “From the point when active treatment is complete.”
Long Term Effects = Problems 5+ years after treatment.
Examples: fatigue, sexual problems, worry
Late Effects = Problems that do not appear until after recovery, usually 3 - 5+ years, sometimes 10 - 20+ years.
Examples: heart disease, diabetes, 2nd cancers
DefinitionsDefinitions
Most Survivors are Surviving
andThriving
Long term outcomesLong term outcomesAgeAge
GeneralGeneralHealthHealth
Regular ExamsRegular ExamsMedicationMedication
Other treatmentsOther treatmentsMental healthMental health
PersonPersonGenesGenes
TumorTumorTypeType
TreatmentTreatmentEventsEvents
TreatmentTreatment
Survivor Late Effects DifferSurvivor Late Effects Differ
ExerciseExerciseNutritionNutrition
Health BehaviorsHealth BehaviorsTobaccoTobaccoAlcoholAlcohol
Health MonitoringHealth MonitoringSunSun
Long term health and wellLong term health and well--beingbeing
GeneralGeneralHealthHealth
Regular ExamsRegular ExamsHealth MonitoringHealth Monitoring
MedicationMedicationOther treatmentOther treatment
Mental healthMental health
You Can TAKE CHARGE!!!!!You Can TAKE CHARGE!!!!!
Health Health BehaviorsBehaviors
ExerciseExerciseNutritionNutritionTobaccoTobaccoAlcoholAlcohol
SunSun
Survivor Quality of Life IssuesSurvivor Quality of Life Issues
Long Term Effects
Late Effects
Medical problems: Premature menopause Lymphedema Urinary frequency, leaking Infertility Neurologic problems (balance,
neuropathy, memory) GI (bowels, bloating, acid reflux) Pulmonary (lung) function Thyroid High cholesterol, triglycerides Diabetes Cardiovascular disease /
metabolic syndrome Bone density loss Dental impairments 2nd cancers
Survivor Quality of Life IssuesSurvivor Quality of Life IssuesSymptoms and Function: Fatigue / lack of stamina
Muscle cramps, aches, pains, stiffness, weakness (and joints)
Sleep
Sexual dysfunction
Restricted social and physical activities
Memory loss, cognitive
Distress and worry
Medical problems: Premature menopause Lymphedema Urinary frequency, incontinence Infertility Neurologic problems (balance,
neuropathy, memory) GI (bowels, bloating, acid reflux) Pulmonary (lung) function Thyroid High cholesterol, triglycerides Diabetes Cardiovascular disease /
metabolic syndrome Bone density loss Dental impairments 2nd cancers
You already know: Your symptoms / how you feel
Do you know: The causes of your symptoms? The risks you have for chronic diseases
as a result of your cancer treatment? What to do to reduce your risks for cancer
recurrence or another cancer? How to feel better?
What to knowWhat to know
To make a plan for your health, you wantto know:
What treatment you received What chronic illnesses to monitor Understand causes of your symptoms
What your specific disease was How to monitor for recurrence
How to coordinate your care with your health care providers
What you can do to feel your best!
What to knowWhat to know
You know not to use tobacco Do you know how to get free help to quit?
Do you know? What nutrition will help you feel your best
and do your best? What to eat What not to eat What supplements are safe or not
How alcohol affects your health as a survivor? Why sunscreen use is more than just about those little
skin cancers people have taken off their noses? Why exercise is even more important after cancer?
What to know: Healthy LifestyleWhat to know: Healthy Lifestyle
IOM Report Identified Survivorship Needs:
1. Every survivor should receive a treatment summary and care plan at the end of treatment.
2. Prevention, surveillance and detection of new and recurrent cancers.
3. Prevention, surveillance and detection for the consequences of cancer and treatment.
4. Coordination between specialists and primary care providers to ensure that survivor health needs are met.
Institute of Medicine (IOM): From Cancer Patient to Cancer Survivor:
Lost In Transition (2005)
• Your oncologist or a survivorship clinic
• LIVESTRONG Care Plan – http://www.livestrongcareplan.org/
• Journey Forward’s Survivorship Care Plan Builder – http://www.journeyforward.org/
• American Society of Clinical Oncology– http://www.cancer.net/patient/Survivorship/ASCO+
Cancer+Treatment+Summaries
• SCCA Survivorship Clinic– www.fhcrc.org/survivorship
Where to get a Survivorship Where to get a Survivorship Care PlanCare Plan
Cancer Treatment Summary Identify increased risks
Screening of medical history and current needs
Physical examination and lab tests focused on long-term and late effects
Guidelines and recommendations for follow-up, including healthy lifestyle and general health maintenance
Referrals and community resources as needed
Communication back to primary oncologist and primary care provider
Survivor Clinical Evaluations Survivor Clinical Evaluations Should Include:Should Include:
Review of cancer and medical history
Plan for monitoring health
Educational information on physical, emotional and daily living needs of survivors
Coordination of care
Referrals: hormone evaluation, osteoporosis, physical therapy, nutrition,
psychology/ psychiatry, rehabilitation therapy, cognitive testing etc, as needed
Navigation to locate community and web-based resources
Educational and energizing classes and events
Survivor Program ServicesSurvivor Program Services
Survivorship Treatment Summary Survivorship Treatment Summary and Care Plan (1)and Care Plan (1)
• Diagnosis:– Cancer type, stage, histology, date and age at
diagnosis
• Care Providers:– Treatment facility and oncology health care
providers and PCP with contact information
• Treatment details:– Chemotherapy, with cumulative doses,
radiotherapy doses and fields, surgical procedures, blood product exposures
Survivorship Treatment Summary Survivorship Treatment Summary and Care Plan (2)and Care Plan (2)
• Complications on and off treatment with long-term implications
• Associated potential risks of treatment including second cancers or specific organ toxicity with screening and follow-up recommendations
• Sent to survivor and healthcare providers
Survivor Rates of Problems Survivor Rates of Problems (FHCRC)(FHCRC)
Health Care Barriers: Nutrition concerns 65% Weight concern 63% Sexual dissatisfaction/
problems women 58% men 44%
Sexually inactive women 40% men 30%
Smoke / tobacco use 4% Alcohol women > 1 / day 43% men > 2 / day 18%
Symptoms, Psychology: Identity issues 55% Relationship issues 44% Distress/fear 36% Pain 34% Fatigue 28% PTSD 15% Depressed: Mild or > clinical 13% Moderate/severe
clinical 4%
Religious/Spiritual 12% Physical limitations 9%
Survivor Rates of Problems Survivor Rates of Problems (FHCRC)(FHCRC)
Health Care Barriers: Adherence
Not gotten health care because of cost 10%
Not gotten health care for psychosocial or side effect reasons 30%
What Else YOU can DoWhat Else YOU can Do
The 3 PThe 3 P’’s of Survivorships of Survivorship
Be proactive for your health: Get informed about your treatment!
Be preventive: Know and follow your guidelines for screening (prostate testing, mammograms, colonoscopy,
cholesterol testing, bone density, etc.)
Get physical: exercise is the best health step youcan take – you have control!
Get a full evaluation to plan your survivorship.
Make an appointment to focus on symptoms if they are not being addressed and treated.
Make a lifestyle plan that is realistic for you.
Build your strength and stamina with an activity plan. Find a ‘team’ to keep you going.
Give yourself, your loved ones, time to heal.
What to Do? Health IssuesWhat to Do? Health Issues
Phone: (206) 667-2814 or toll free 1-866-543-4272E-mail: [email protected]
Off treatment (non-hormonal) without active oncologic diseaseAll agesAll diseasesAny location of oncology treatmentAny referral source: Oncologist Primary care provider Self
Survivorship Program: EligibilitySurvivorship Program: Eligibility
Health BehaviorsHealth Behaviors
OutreachOutreach
OutreachOutreach
YMCA and Hutchinson Center collaboration
12-week, 2 times a week, 90 min.
Training by personal trainerstrained by oncology physical therapist
Content: exercise, learning, support– Offered at multiple locations– Lower charge than regular Y – Includes membership for survivor
and family for duration of program– Call: 206-667-2814
Build Muscle and Energy!Build Muscle and Energy!Exercise and Thrive ProgramExercise and Thrive Program
1. Most survivors recover and do very well physically and emotionally
2. Long term effects that do not resolve with time depend on disease and treatment You need to know your risks You want a plan for your health
3. Be an informed survivor: Make your plan and follow it Expect and deal with your emotions and worries Get a survivorship evaluation or do one online PLAY!
KEY MESSAGESKEY MESSAGES
• Your oncologist or a survivorship clinic
• LIVESTRONG Care Plan – http://www.livestrongcareplan.org/
• Journey Forward’s Survivorship Care Plan Builder – http://www.journeyforward.org/
• American Society of Clinical Oncology– http://www.cancer.net/patient/Survivorship/ASCO+
Cancer+Treatment+Summaries
• SCCA Survivorship Clinic– www.fhcrc.org/survivorship
Where to get a Survivorship Where to get a Survivorship Care PlanCare Plan
QUESTIONS?QUESTIONS?
DISCUSSIONDISCUSSION
Survive and Thrive!Survive and Thrive!