Wellness for Cancer Survivors

1. Wellness for Cancer Survivors From Surviving To Thriving

2. Tallahassee Memorial Cancer Center’s Comprehensive Navigation System Travis Greenman, BBA, M.Div. Cancer Survivor Navigator Wendy Matthews-Wheeless, RN, BSN Breast Cancer Patient Navigator Paige Peterman, RN Thoracic Oncology Navigator Research Nurse

3. Who is a Cancer Survivor? Anyone who has been diagnosed with cancer is a survivor – from the time of diagnosis and for the balance of life Caregivers and family members are also cancer survivors

4. Three “Seasons” of Survival Acute Survival Diagnosis, diagnostic and therapeutic efforts Fear and Anxiety Extended Survival Remission, watchful waiting, consolidation therapy Fear of recurrence, toxicity of therapy Permanent Survival “Cure” Long-term risks, late effects Slide from Ann Partidge of the Dana-Farber Cancer Institute presentation, speaking on Creating a Survivorship Care Plan for Women with Breast Cancer, published 6/15/2007

5. From the Institute of Medicine: From Cancer Patient to Cancer Survivor: Lost in Transition, released in 2005 The number of cancer survivors in the United States has more than tripled to almost 10 million over the past 30 years thanks to advances in detection and treatment. In the United States, half of all men and one-third of all women will develop cancer in their lifetimes. Advances in the detection and treatment of cancer, combined with an aging population, mean greater numbers of cancer survivors in the near future.

6. National Cancer Institute Fast Facts about Cancer Survivors As of January 1, 2006, it is estimated that there are 11.4 million cancer survivors. This represents approximately 3.8% of the population. 60% of survivors are currently 65 years of age and older. Female Breast (23%), Prostate (20%), Colorectal (10%) and Gynecologic (9%) are the most common cancer sites. Approximately 14% of the 11.4 million estimated cancer survivors were diagnosed 20 or more years ago.

7. Estimated Number of Cancer Survivors in the United States from 1972 to 2006 (From National Cancer Institute) (1986 NCCS established)

8. Survivors on January 1, 2006 by Site (N=11.4M) (From National Cancer Institute)

9. Tallahassee MemorialCancer Center We are following over 8,000 Cancer Survivors on Cancer Registry!

10. One in every seven survivors were diagnosed over 20 years ago! 66% of all patients diagnosed with cancer today will live more than five years. Among children, the 10 year survival rate is approaching 75%. Cancer for many has become a chronic illness Over 80% of all cancer patients are treated in the community The Good News:

11. What has contributed to this remarkable progress? Earlier detection New and more effective therapies, often including multimodal and multi-agent combinations More effective adjuvant and/or maintenance therapies Better supportive care Growing attention to long-term surveillance

12. As of 2002, 38% of survivors were of “working age” (ages 20-64 years old). 80% of people return to work after a cancer diagnosis. Studies have shown little, if any, difference in the work performance of cancer survivors who return to work. One in five survivors will have cancer related work limitations up to five years after diagnosis.

13. Many survivors describe their cancer journey as a life changing event. They report a new outlook on life and a better ability to “not sweat the small stuff”.

14. Completing Treatment is an Achievement!Still, Cancer Survivors have ambiguous feelings. “Surviving cancer is more complicated than simply being sick or well … having cancer, or being cancer-free. Instead, it’s a continual process of survival that is constantly changing. There may be times when the joy you feel about survival far outweighs any anxieties you may have. Then, there will be times when your fears and uncertainties seem to take over your life, and you wonder if you’ll ever feel normal again. These changes might involve family and friends who are trying to adjust to your experiences after cancer, but often don’t – or can’t – understand what you’re feeling. Many survivors face challenges in school or at work. You may have to fight against discrimination and fight for the chance to recover at your own pace. And, you may need to deal with intense feelings, like anxiety, anger, uncertainty, unresolved grief, and loss.” Linda, Cancer Survivor

15. Cancer Survivors are Over-comers with special issues and health concerns which need to be addressed. The majority of individuals successfully treated for cancer report adequate to good health related Quality of Life following treatment BUT Being disease free, does NOT mean you are free of your disease. Cancer can affect all aspects of a person’s life.

16. Treatment with surgery, chemotherapies, radiation, and/or other cancer treatments can leave survivors at higher risk for health complications compared with their peers who have not had such treatments. Some complications may not develop for 10 or more years after treatment (these are often called late effects).

17. Essential Components of Survivorship Care Prevention Recurrence, new cancers, late effects Surveillance Recurrence, Second Cancers Medical and psychosocial late effects Intervention Consequences of disease and treatment Coordination Among providers to ensure healthcare needs are met Slide from Ann Partidge of the Dana-Farber Cancer Institute presentation, speaking on Creating a Survivorship Care Plan for Women with Breast Cancer, published 6/15/2007

18. Surveillance All Cancer Screenings: Mammograms, DRE/PSA, Colonoscopies Cardiovascular disease is a possible late-onset side effect of radiation to the chest – monitor with stress tests and lipid levels Bone Density affected by radiation and hormone therapy Some therapy increases risk of and/or worsens diabetes Regular check ups

19. Some Potential Late or Long term Side Effects Fatigue Memory and Attention problems Neuropathy Lymphedema Mouth or Teeth Problems; Trouble swallowing Changes in weight and eating habits Bladder or Bowel Control problems Menopause symptoms Body Changes and Intimacy

20. From “The Mountain you have Climbed: A Young adult’s guide to childhood cancer survivorship” Beyond the Cure Only a small number of survivors incur serious late effects Ongoing research has the potential to reduce or prevent late effects Learning about late effects, practicing preventative medicine, and maintaining a healthy lifestyle may help survivors reduce the risk of late effects.

21. Emotional and Spiritual Issues of Cancer Survivors Coping with uncertainty of recurrence Feeling Angry/Feeling Alone Coping with depression and anxiety Finding meaning after cancer Finding support Advocacy and Helping others Social and Work Relationships Family Relationships Financial and Legal Issues

22. Key facts about their treatment which Survivors need to keep Date of diagnosis and type of cancer Pathology reports, with stage and type Places and dates of treatment, such as Details of all surgeries Sites and total amounts of radiation therapy Names and doses of chemotherapy and all other drugs Key lab reports, x-ray reports, CT scans, and MRI reports List of signs to watch for and possible long-term effects of treatment Contact information for all health professionals involved in their treatment and follow up care Any problems that occurred during or after treatment Information about supportive care they’ve received (such as special medicines, emotional support, and nutritional supplements)

23. Wellness Plan for Cancer Survivors Reduce Risks Quit Smoking; Smoking increases chance of cancer at same or another site Cut down on quantity of alcohol; Alcohol increases chance of certain cancers Practice Sun Safety Eat Well A Plant based diet with 5 to 9 fruit and vegetables a day Beans and Whole grains Foods low in fat and salt Get to and stay at a healthy weight Exercise and stay active. Moderate exercise (30 minutes every, or almost every day of walking, biking, swimming) Reduce anxiety and depression Improve mood and boost self-esteem Reduce fatigue, nausea, pain, and diarrhea Remain vigilant in screening and follow up plan of care

24. Cancer survivors, you are invited! What: Accessing Self: The Integration of Creativity and Healing (Leader: Merrilee Jorn, M.S., A.T.R.) When: Mondays from 10 - 11:30 a.m. Sept. 14 – Nov. 2, 2009 Where: Goodwood Museum & Gardens Laundry Cottage, 1600 Miccosukee Road 32308 To register, call 431-5256 or email Travis.Greenman@tmh.org by August 31, 2009.

25. Exit Interviews with Survivor Navigator “Facing Forward” publication from NCI to add to “One Notebook” Soon: adapted “Managing Uncertainty” CD Special group of volunteers to make weekly calls Finger Labyrinths, Celtic Knots, Check out CDs Wellness program for Cancer Survivors Speaker Series Certified Cancer Trainer and Survivor

26. ? Questions ? Thank you.