1. Cancer Survivorship Care Why, What, Where Kenneth Miller, M.D. Sinai Hospital Baltimore, MD

2. Changes in long-term survivorship over 3 decades 1980-1985 1990-1995 2000-2005

3. Data source: 2004 Submission. U.S. Estimated Prevalence counts were estimated by applying U.S. populations to SEER 9 and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete prevalence. Populations from January 2002 were based on the average of the July 2001 and July 2002 population estimates from the U.S. Bureau of Census. Estimated Number Cancer Survivors in the United States from 1971 to 2003

5. Acute treatment is only a small part of the seasons of survivorship.

6. “When I was in treatment, I had all the steps laid out in front of me. I knew what I had to do to fight this disease. Now, I find myself wanting to go to clinic, to be getting chemo, to DO SOMETHING.” Transitional Survivorship

7. “It has been about four years since I completed my chemotherapy. There isn’t a day that I don’t think about cancer though it is not hourly!”

8. “Cancer is just one of many issues that I have faced “. “Cancer helped me; I love more, I care more, my life means more to me”

9. Living With cancer NED

11. Copyright © 2013 by American Society of Clinical Oncology Use of the Word “Cure” in Oncology

12. Follow-up Care at 20 years Follow-up after 20 years was recommended by oncologists for patients with a history of Breast- 50% Colon- 28% Lung- 36% Lymphoma- 40% Most oncologists thought that the residual risk of recurrence was 0%

14. So who are we seeing as cancer survivors for follow-up care?

15. Distribution of Care at a Major Cancer Center 383 patient visits from one week were analyzed 243 were actively receiving treatment 63% 81 <=5 years post-tx 21% 11 6-10 years post-tx 3% 4 >10 years 1%

16. Who are We Caring For?

17. Data re: 18,000 visits to a CCC

20. What problems are we seeing in cancer survivors?

22. LLE that I most clearly remember in my patients in 25 years 1)Steve died of a secondary leukemia after treatment of Stage III HD 2)Mary developed significant CHF after tx with CHOP for NHL. 3)Mark developed carotid artery disease,a TIA, and hypothyroidism after RT for SCCHN

23. Why So Small a Group? Are my patients unusually fortunate? Have I been treating patients less aggressively? Is it possible that I am not seeing my patients for long-term follow-up? Am I unusually good?

24. Allogeneic BMT Autologous BMT NHL, Testicular Breast DCIS, Prostate

25. What LLE are We Seeing? What we are noting and what patients are experiencing may be different We reviewed office notes from visits for cancer survivors at 6-10 years >10 years

26. LLTE at >10 years Cardiovascular 6% Musculoskeletal 6% Hypothyroid 6% Fatigue 3% Sexual Health 2% Lymphedema 2% So For example; Cardiac disease for survivors at 10+ years is 6% of the 1% of the total visits = <<1%

29. How about for Adult Cancer Survivors? Medical Emotional Financial Spiritual

30. CHEMOTHERAPY RADIATION SURGERY Age Gender Social Genetics Other health Lifestyle RISK OF LONG TERM AND LATE EFFECTS Emotional

32. What Care Was Provided for Cancer Survivors at >10 years? Surveillance 100% Prevention 13% Coordination 11%

33. Survivorship Is a ‘teachable and a learnable moment’ Healthy behaviors (e.g., diet, exercise, healthy weight, sunscreen use, immunizations, smoking cessation, osteoporosis prevention) Preventive care and treatment of co- morbid conditions

37. BMIPREPOSTPost-Pre MEAN31.2230.91-0.31 STD.DV.S5.91

38. IPAQ Continuous Scoring PrePost Post- Pre Mean 2525.8 13588.65 1062.8 3 Std Dev 2940.1 74466.89 1526.7 2 Sitting Mean169.60300.63131.03 Std Dev154.91123.31 International Physical Activity Questionnaire – Impact of intervention

39. Many of our patients are cured! The value of surveillance at 20 years is limited The risk of LLE is relatively small The need for secondary prevention is great!

40. History Exam Medical Decision Making Time

41. Nurse Practitioner Visits 250/year @ $220 = $55,000 in charges=$27,000 collected 20% of FTE for these= $30,000 Downstream charges = $200,000 PCP Visits Integrate survivorship care with other health care Stressing Secondary Prevention