Karen Syrjala, PhD Co-Director, Survivorship Program

1. Who are survivors of cancer? 2. Why do you care about your needs as a survivor? 3. What can you do to stay well as a survivor?

Who are Survivors? anyone who has been diagnosed with cancer from the time of diagnosis through the balance of his or her life What is Survivorship? Care for the unique needs of survivors after active treatment ends Yes, lots of people hate these terms! (no one can agree on what is better, so best to focus on progress in meeting needs of people after treatment)

Number of cancer survivors in the United States from 1977 to 2022 by years since diagnosis 18 million expected by 2022 41% will have cancer in their lifetime 66% will be long-term survivors People diagnosed with cancer should expect to live! de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570

de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570

Medical Problems: Premature menopause Infertility Neurologic problems (balance, neuropathy, memory) Lymphedema Urinary incontinence GI (bowels, bloating, acid reflux) Diabetes Hyperlipidemia Cardiovascular disease, cardiomyopathy Osteoporosis / osteopenia Pulmonary function Hypothyroidism Dental impairments Recurrence, 2 nd cancers Symptoms and Function: Fatigue Pain Sexual dysfunction, hot flashes Muscle and joint problems Memory loss, chemo-brain Sleep problems Grief and loss Distress, fear, worry, depression Practical Issues, Lifestyle Finances, insurance Relationships Exercise Smoking, Alcohol Nutrition School Work

Age Gender Genetics Social RADIATION CHEMOTHERAPY Other Health Lifestyle SURGERY

619 Cancer Survivors 36% reported fair or poor health status 58% were overweight 23% were current smokers 82% did not eat five or more fruits and vegetables daily 55% did not report regular physical activity < 10% reported all three healthy lifestyle behaviors and had a healthy weight.

www.livestrong.org

Percentage of people who report physical concerns

Lack of care: Percentage of people who did not receive help for their concerns

Essential Components of Quality Survivorship Care PREVENT cancer and medical problems from treatment. (Regular health care follow-up, physical activity, diet, smoking TREAT consequences of cancer. (Pain, memory / concentration, fatigue, medical problems, etc. MONITOR Recurrence, second cancers, medical and psychosocial late effects COORDINATE between health care providers, especially oncology and primary care Hewitt M, et al. eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington DC; The National Academies Press; 2005

Goals of a Survivorship Care Plan 1. Increase understanding of your diagnosis and treatment and potential consequences of that treatment 2. Identify and find solutions to symptoms and other problems remaining from treatment 3. Promote a healthy lifestyle 4. Inform you of recommended medical follow-up needed for cancer and other health concerns 5. Help inform your primary care and other providers about your cancer-related needs

Inclusion of Survivorship in COC Accreditation Standards 1. A Survivorship Care Plan is given to every patient on completion of treatment. 2. The Survivorship Care Plan contains a record of care received, important disease characteristics, and a follow-up care plan.

Treatment Summary and Survivorship Care Plan Diagnosis: Cancer type, stage, histology, etc. Care Providers: Treatment facility and oncology health care providers and PCP Treatment details: Chemotherapy, with selected cumulative doses, radiotherapy doses and fields, surgical procedures, blood product exposures Complications on/off treatment with long-term implications Potential Risks of treatment including second malignancy or specific organ toxicity with screening and follow-up recommendations Follow-up Recommendations: cancer related and general health & well being. Cancer screening, prevention, diet, exercise, symptom management, etc Sent to survivor and healthcare providers

1. TREATMENT SUMMARY

Long term effects and Follow-Up care Recommendation (All truncated here) Secondary cancers Cardiac (Heart) (with high exposure based on Adriamycin or radiation dose) Musculoskeletal Peripheral Neuropathy Mental Health Fertility Cognitive/Memory concerns Bone Health There is a low risk for leukemia secondary to chemotherapy exposure. Annual blood counts may be recommended Currently 43 late effect topics. Heart problems can occur after certain chemotherapy drugs (anthracyclines) or after chest radiation depending on the doses you have received. An electrocardiogram (ECG), echocardiogram, and/or other Recommendations cardiac studies may be recommended differ on by: Muscle and joint aches, stiffness and pain are common after cancer treatment. Opioid pain medications generally do not address the underlying Specific cause. Regular Exposure: exercise both aerobic and resistance training, stretching, and yoga can decrease symptoms.. Chemo (type/dose) Chemotherapy may lead to peripheral neuropathy which can cause the 2. CARE hands or PLAN: feet Radiation to hurt, tingle, or (site/dose) feel numb or weak. This may resolve over a few months or may persist. Stretching exercises, acupuncture, Surgery and massage therapy Patients treated for cancer frequently experience depression, anxiety, Medical or post-traumatic Modified needs stress by: disorder (PTSD). Symptoms can occur immediately or surface months to years after treatment. Diagnosis Chemotherapy and radiation can affect your fertility. It is important to know your Age fertility status. Women should keep tract of menstrual Gender It is common after chemotherapy to experience some changes in memory and cognition, frequently referred to as chemo brain. Most often these affects improve over the first year after therapy is complete; however some residual effects may persist. Radiation, steroids, and decreased mobility can affect your bone health. Regular weight bearing exercise, daily calcium and vitamin D, and limiting alcohol as well as screening for osteoporosis with a DEXA

WELLNESS Recommendations Health Maintenance Exercise and Physical Activity Lymphedema Nutrition Make sure you keep up to date on vaccinations and routine health maintenance screening (cholesterol, blood pressure, skin The SCCA encourages breast cancer survivors to adopt a physically active lifestyle. Try to engage in at least 30 minutes of moderate Review lymphedema prevention education. Consider a referral to physical therapy for lymphedema, range of motion The SCCA supports the nutrition guidelines of the American Cancer Society to optimize health and reduce cancer risk. Genetic counseling and testing Fear of Recurrence Heart Health If there is a history of cancer in your family, or if you were diagnosed with breast cancer at a very young age, Develop and strengthen coping skills. Talk to friends and family. Request a referral to a therapist and information on Low fat diet, regular aerobic exercise and maintaining weight and blood Wellness pressure. Know what your cholesterol level is. Regular exercise both aerobic and resistance training, stretching, Bone Health Regular weight bearing exercise. Daily Calcium and vitamin D, Pain 3. CARE PLAN: Fatigue Sexual Health/Body Image Memory/ cognitive concerns Adequate sleep, regular exercise and good nutrition will facilitate recovery and reduce fatigue after treatment. Communicate with your partner. Suggest vaginal lubricants/ moisturizers and plan time for intimacy. Look into organizational strategies such as establishing a routine Plan

FOLLOW-UP CARE TEST LAST DONE FREQUENCY PROVIDER TO CONTACT Complete Physical Exam Yearly Oncology Follow-up As per oncologist Surveillance for Risk of Set by your Recurrence Oncologist Bone Density Test (DEXA) Every 2-5 years Colonoscopy Every 10 years Screening Labs Gynecological Exam Yearly 4. CARE PLAN: Pap Smear Every 3 years Mammogram Every 2 years Breast MRI Skin Exam Follow-up Yearly Cardiac Screening TBD Vision Exam Yearly Dental Exam Twice a year Immunizations Yearly CONTACT/RESOURCES Education Survivorship Notebook provided Contact Survivorship Clinic survivor@seattlecca.org or 206-288-1021 Resources NEXT DUE

Cancer survivors have more medical, symptom, function, and emotional needs than people without cancer Survivorship Care Plans address all of these needs No one can promise you perfect solutions to everything, but it might surprise you how many options you have

K. Scott Baker, MD, Director Karen Syrjala, PhD, Co-Director Elizabeth Kaplan, MD Leslie Vietmeier, ARNP Debra Loacker, RN Emily Rajotte, Program Manager Emy Jensen, Project Coordinator Joli Bartell, Project Coordinator Sheri Ballard, Research Assistant Kelly Ambrose, Project Manager