Late Effects after Cancer: Survivorship Care Planning

Transcription

1 Healthy for the Holidays: Late Effects after Cancer: Survivorship Care Planning Karen Syrjala, PhD Co-Director, Survivorship Program SURVIVORSHIP PROGRAM a member of the

2 TODAY S S TOPICS Surviving cancer: the big picture What are common problems after cancer treatment Planning for your care after treatment

3 Knowledge is Power 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.

4 Definitions 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 years. Examples: heart disease, diabetes, 2 nd cancers

5 Most Survivors are Surviving and Thriving

6 Survivor Late Effects Differ Person Genes Treatment Events Age Long term outcomes Tumor Type General Health Regular Exams Medication Other treatments Mental health Exercise Nutrition Health Behaviors Tobacco Alcohol Health Monitoring Sun Treatment

7 You Can TAKE CHARGE!!!!! Long term health and well-being General Health Regular Exams Health Monitoring Medication Other treatment Mental health Health Behaviors Exercise Nutrition Tobacco Alcohol Sun

8 Survivor Quality of Life Issues 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 2 nd cancers Long Term Effects Late Effects

9 Survivor Quality of Life Issues 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 2 nd cancers Symptoms 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

10 What to know 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?

11 What to know To make a plan for your health, you want to 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!

12 What to know: Healthy Lifestyle 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?

13 Institute of Medicine (IOM): From Cancer Patient to Cancer Survivor: Lost In Transition (2005) 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.

14 Where to get a Survivorship Care Plan Your oncologist or a survivorship clinic LIVESTRONG Care Plan Journey Forward s Survivorship Care Plan Builder American Society of Clinical Oncology Cancer+Treatment+Summaries SCCA Survivorship Clinic

15 Survivor Clinical Evaluations Should Include: 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

16 Survivor Program Services 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

17 Survivorship Treatment Summary 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

18 Survivorship Treatment Summary 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

19 Survivor Rates of Problems (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%

20 Survivor Rates of Problems (FHCRC) Health Care Barriers: Adherence Not gotten health care because of cost 10% Not gotten health care for psychosocial or side effect reasons 30%

21 What Else YOU can Do

22 The 3 P s P s 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 you can take you have control!

23 What to Do? Health Issues 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.

24 Phone: (206) or toll free

25 Survivorship Program: Eligibility Off treatment (non-hormonal) without active oncologic disease All ages All diseases Any location of oncology treatment Any referral source: Oncologist Primary care provider Self

26 Health Behaviors

27 Outreach

28 Outreach

29 Build Muscle and Energy! Exercise and Thrive Program YMCA and Hutchinson Center collaboration 12-week, 2 times a week, 90 min. Training by personal trainers trained 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:

30 KEY MESSAGES 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!

31 Where to get a Survivorship Care Plan Your oncologist or a survivorship clinic LIVESTRONG Care Plan Journey Forward s Survivorship Care Plan Builder American Society of Clinical Oncology Cancer+Treatment+Summaries SCCA Survivorship Clinic

32 Survive and Thrive! QUESTIONS? DISCUSSION