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

2 Today s Goals Know more about survivor needs Consider your own health needs during the holiday Understand and plan for your survivorship

3 Surviving Cancer: Good News and Not So Easy

4 HOLIDAY CHEER?

5 Survivor Late Effects Differ Person Genes Diagnosis Treatment Long term health and well-being General Health: Regular Exams Medication Other treatments Mental health Health Behaviors: Health Monitoring Exercise Nutrition Tobacco Alcohol Sun

6 Survivor Late Effects Differ Long term health and well-being General Health: Regular Exams Medication Other treatments Mental health Health Behaviors: Health Monitoring Exercise Nutrition Tobacco Alcohol Sun

7 Survivor Have Needs Medical Concerns: 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

8 Survivor Have Needs Medical Concerns: 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 Recurrence and 2 nd cancers Symptoms and Function: Fatigue Pain Nausea Sexual dysfunction, hot flashes Sleep problems Muscle and joint problems Memory loss, chemo-brain Distress, worry, depression Practical Issues, Lifestyle Nutrition Exercise School Work Insurance Relationships Smoking, Alcohol

9 LIVESTRONG Survey In 2007 LIVESTRONG Foundation in surveyed post-treatment cancer survivors about their physical, emotional and practical concerns Over 2,000 cancer survivors participated

10 LIVESTRONG Survey: Results % of Survivors who reported physical, emotional and practical concerns Energy Concentration Sexual function Fear of recurrence Grief and identity Personal appearance School Employment Debt Source: LiveStrongFoundation

11 LIVESTRONG Survey: Results % of Survivors reporting unmet concerns Energy Concentration Sexual function Fear of recurrence Grief and identity Personal appearance School Employment Debt Source: LiveStrongFoundation

12 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?

13 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!

14 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?

15 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.

16 Inclusion of Survivorship in Accreditation Standards Source: American College of Surgeons, Commission on Cancer,

17 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 Addressing your symptom and emotional needs Referrals and community resources as needed Communication back to primary oncologist and primary care provider

18 Review of cancer and medical history Plan for monitoring health Educational information on physical, emotional and daily living needs Coordination of care Referrals: Survivor Program Services 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

19

20

21 ONLINE RESOURCES LIVESTRONG.org CancerCare.org thewellnesscommunity.org Search for your disease foundation

22 Exercise and Thrive Program YMCA, LIVESTRONG and Hutchinson Center collaboration 12-week, 2 times a week Training provided by YMCA and the SCCA / Hutchinson Center Program : weight resistance exercise education/support Offered at multiple locations Lower charge than regular Y Improves: blood pressure, strength, endurance, flexibility, fatigue, mood, muscle and joint pain

23 Where to get a Survivorship Care Plan Your oncologist or a survivorship clinic Online: LIVESTRONG Care Plan Journey Forward s Survivorship Care Plan Builder SCCA Survivorship Clinic

24 Survivorship Program Phone: (206) K. Scott Baker, MD - Director Karen Syrjala, PhD - Co-Director Joli Bartell, Project Coordinator Emy Hammond, Program Assistant Deb Loacker, RN Emily Jo Rajotte, Program Manager Jessica Weeber, Research Assistant Theresa Wittenberg, PA-C

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 Survivor Needs Health Care Barriers: Nutrition concerns 65% Weight concern 63% Sexual dissatisfaction/ problems women 58% men 44% 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%

27 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 the disease and treatment, as well as individual factors You need to know your risks You want a plan for your health 3. Be an informed survivor: Get a survivorship care plan Expect and deal with your emotions and worries Make a holiday gift to yourself to plan for your health Pioritize and plan so you ENJOY the holidays!