1. I am not Bobbie Head Sure would like to be more like her!

2. Survivorship in Marin County: What we have-What we need Cindi Cantril, RN, OCN, MPH Coordinator of Cancer Support Services Nurse Navigator Martin O’Neil Cancer Center St Helena Hospital Cantrica@ah.org

3. In 15 mins! I will: Review definitions of survivorship Review definitions of survivorship Provide guidelines for survivorship planning Provide guidelines for survivorship planning Marin Accomplishments Marin Accomplishments Discuss strategies for successful survivorship programs (A Champion!) Discuss strategies for successful survivorship programs (A Champion!)

4. In the U.S. In the U.S. 66% of adults diagnosed can expect to be alive in five years 66% of adults diagnosed can expect to be alive in five years > 12 million Americans are cancer survivors > 12 million Americans are cancer survivors Survivors are a growing minority population Survivors are a growing minority population ACS, Cancer Fact and Figures, 2009 The Good News…

5. Cancer is a chronic disease for many Cancer is a chronic disease for many With or without treatment With or without treatment Many long term consequences can be treated or managed, some can be prevented Many long term consequences can be treated or managed, some can be prevented The needs of long term survivors of adult cancers are not clearly understood or met The needs of long term survivors of adult cancers are not clearly understood or met Majority of long term oncology care is from primary care providers in community settings Majority of long term oncology care is from primary care providers in community settings  Published national reports call for action The Reality…..

6. Anyone from diagnosis through the balance of life (NCCS) Anyone from diagnosis through the balance of life (NCCS) Including family and friends (NCI) Including family and friends (NCI) Individuals who have completed treatment and are in remission Individuals who have completed treatment and are in remission ????? ????? What about those surviving with active disease? What about those surviving with active disease? Who is a Survivor?

7. Influences on Improved Survival Early Detection Early Detection New drugs and therapies New drugs and therapies Combined modality therapies Combined modality therapies Prolonged adjuvant& or maintenance therapies Prolonged adjuvant& or maintenance therapies

8. Models of Care: Who Provides Survivorship Care? Providers Providers Primary care Practitioners Primary care Practitioners Oncology Specialists Oncology Specialists Disease-specific specialists Disease-specific specialists Advanced Practice Nurses Advanced Practice Nurses Congrats to pediatric oncologists

9. Historically, upon completion of cancer therapy, “usual practice” for follow-up included: Focus on monitoring for cancer recurrence and evaluating toxicity of treatment 1 Focus on monitoring for cancer recurrence and evaluating toxicity of treatment 1 Limited duration and scope of follow-up, generally not extending beyond surveillance for recurrence or use of specialized services 1 Limited duration and scope of follow-up, generally not extending beyond surveillance for recurrence or use of specialized services 1 Frequent loss to follow-up 1 Frequent loss to follow-up 1 Infrequent formal transition from oncologist to primary care physician 1 Infrequent formal transition from oncologist to primary care physician 1 Oeffinger K, McCabe M. Models for delivering survivorship care. J Clin Oncol. 2006;24:32.

11. What can we do at the Marin Cancer Institute?

12. Program History Developed MCI Survivorship Advisory committee in 2006 Developed MCI Survivorship Advisory committee in 2006 Attended the 2006 City of Hope Conference Attended the 2006 City of Hope Conference Developed goals and objectives Developed goals and objectives Surveyed post treatment group Surveyed post treatment group

13. Survey Results Survey sent to 120 breast cancer survivors one to two years post diagnosis who had received multimodal treatment Survey sent to 120 breast cancer survivors one to two years post diagnosis who had received multimodal treatment 68 surveys returned 68 surveys returned Results directed program planning: Results directed program planning: Fatigue, hot flashes, sexual dysfunction Fatigue, hot flashes, sexual dysfunction Cognitive Changes Cognitive Changes Sleep disturbances Sleep disturbances Weight changes Weight changes Defining new normal Defining new normal Managing Stress Managing Stress Communication Communication

14. 2008 Accomplishments Spring and Fall Horses as Healers at Miwok Stables Spring and Fall Horses as Healers at Miwok Stables March 1 CCantril spoke at NCCC with resource table D Brandon March 1 CCantril spoke at NCCC with resource table D Brandon March 15 “Sex and the Survivor” symposium Dr Head et al March 15 “Sex and the Survivor” symposium Dr Head et al April “Mending Under the Moon” retreat April “Mending Under the Moon” retreat ACOS survey ACOS survey Dr Head and C Cantril present at NCI/City of Hope Dr Head and C Cantril present at NCI/City of Hope Breast outreach Internationally Breast outreach Internationally September “Mending Under Autumn Moon” for women with metastatic disease September “Mending Under Autumn Moon” for women with metastatic disease October 16 Primary Care Symposium on Breast Cancer October 16 Primary Care Symposium on Breast Cancer

15. Key Programs Retreats Retreats Horses As Healers Horses As Healers Educational Offerings Educational Offerings Physical recovery programs Physical recovery programs Institute of Health and Healing Institute of Health and Healing

16. Partnerships California Cancer Care California Cancer Care Foundation of Integrative Oncology Foundation of Integrative Oncology Marin Cancer Institute Marin Cancer Institute Institute of Health and Healing Institute of Health and Healing Community Advocacy Groups Community Advocacy Groups American Cancer Society American Cancer Society Kaiser Kaiser UCSF UCSF

17. Why a Survivorship Care Plan? 1. Summarize & communicate what transpired during cancer treatment 2. Describe known & potential late effects with expected time course 3. Communicate to survivor and HCPs what has been done and what needs to be done 4. Promote a healthy lifestyle to reduce risk of recurrence & manage co-morbidities

18. 1) Prevention of recurrent and new cancers, and other late effects; 2) Surveillance for cancer spread, recurrence, or second cancers; assessment of medical and psychosocial late effects; 3) Intervention for consequences of cancer and its treatment; 4) Coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM, 2006)

19. What is needed? Written detailed records of treatments Written detailed records of treatments Written follow-up plans Written follow-up plans Guidance about long term effects, signs and symptoms and recurrence Guidance about long term effects, signs and symptoms and recurrence Resources Resources Insurance coverage for multidisciplinary care to meet survivor needs Insurance coverage for multidisciplinary care to meet survivor needs Access to specialty care for health promotion, disease prevention, rehabilitation and psychosocial support Access to specialty care for health promotion, disease prevention, rehabilitation and psychosocial support

20.  Smoking cessation  Fitness & exercise  Screening & interventions r/t osteoporosis  Nutrition & healthy weight management  Cholesterol & triglycerides  Limited sun exposure and use of UV screens  Stress management  Hypertension management  Safe sex  Vaccinations  Diabetes screening  Genetic testing & counseling  Family interventions  Other community resources – e.g., compounding pharmacy, lymphedema services, support groups, retreats Sharing responsibility ……..

21. Sequelae occur anytime from pre- diagnosis to many years after therapy Sequelae occur anytime from pre- diagnosis to many years after therapy Many survivors either haven’t been told or did not remember being told Many survivors either haven’t been told or did not remember being told Many did not make the connection between current health status and past cancer or cancer therapy Many did not make the connection between current health status and past cancer or cancer therapy Curtiss, Haylock and Hawkins (2006) AJN 106(3):48-52 Remember

22. Survivorship is an artful process of creating a new normal.

23. Sources: Earle C. Failing to plan is planning to fail: improving the quality of care with survivorship plans. J Clin Oncol. 2006;24(32): 5112-5116. Hewitt et al. (Eds). Committee on Cancer Survivorship. From Cancer Patient to Cancer Survivor: Lost in Transition. Institute of Medicine, National Academies Press, 2005. Projected Course of Recovery and Adjuvant Therapy Recommended Screening, Testing and Examinations Information on Late and Long-Term Effects Signs of Recurrence and Second Tumors Psychosocial Concerns Potential Insurance, Employment and Financial issues Healthy Behaviors Genetic Counseling Referrals to Follow-up Care Providers

24. How? End of treatment “Exit Interview” (CQI/QA) What did we do right? What did we do right? What could we do better? What could we do better? Treatment summary Treatment summary Systems/organs at risk overview Systems/organs at risk overview Identify follow-up plan Identify follow-up plan Identify “safety net” strategies Identify “safety net” strategies Wellness pathways Wellness pathways Community resources Community resources