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: survivor@fhcrc.org

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!