Cancer Survivorship : Life After Treatment Ends

1. Cancer Survivorship : Life After Treatment Ends Gilbert Almanza, RN, MSN, AOCNP Oncology Nurse Practitioner Horizon Oncology

2. Objectives • I. Definition of Survivorship • II. Purpose of Survivorship Movement • III. Factors that Impact Survivorship • IV. Treatment Summary and Plan • V. Roles in Survivorship Care

3. Going through the journey “If you’re going through hell, keep going.” Winston Churchill, British statesman, 1874-1965

4. How do we define a cancer survivor? National Coalition for Cancer Survivorship: “Survivorship starts at the time of diagnosis, and proceeds along a continuum through and beyond treatment, recurrence, cures, and final stages of life regardless of its cause.” Extended definition includes “caregivers, family, and friends”

5. How many people does this include? • Estimated 12 million cancer survivors in United States in 2012. • Expected to grow to 18 million by 2022 • Sixty-five percent diagnosed in last 5 years. • Twenty-five percent in 5-10 years • Fifteen percent within last 20 years American Cancer Society, 2012

6. Gender- Female Long term remission by site: • Breast 41 percent • Uterine corpus 8 percent • Colorectal 8 percent • Melanoma 7 percent • Thyroid 6 percent International Agency for Research on Cancer, 2013

7. Gender-Male Long term remission by site: • Prostrate 43 percent • Colorectal 9 percent • Melanoma 7 percent • Bladder 7 percent • Non-Hodgkin Lymphoma 4 percent International Agency for Research on Cancer, 2013

8. Diversity of survivorship includes • Many cancer survivors who are experiencing cures. • Others who may experience long term remissions lasting decades. • Those with multiple episodes of retreatment during remission periods. • Almost half of survivors are over 70 years old. • Five percent are under the age of 40 years. American Cancer Society, 2012

9. Survivorship, Now What? “Survival rates, while justifiably important in themselves, cover only a portion of the total problem. These rates do not relate to how the patient survives; at what cost to his/her physical functioning; how he/she is fulfilling his role in family, work, among friends, and in the wider society…” Izask and Medalie, 1971

10. Survivors may experience: • Confusion over chemotherapy/biological therapies they received. • Confusion over management of side effects from therapy. • Confusion over who to see when experiencing new symptoms. • Difficulty with financial issues regarding treatment and surveillance.

11. They May Also Experience • Uncertainty over surveillance schedule. • Uncertainty over impact on future employment. • Unclear information on changes in physical, mental, spiritual, emotional, sexual, and social domains.

12. Survivorship Movement • 1986 Survivorship movement started with formation of National Coalition of Cancer. Survivors. • 1996 Development of the office of cancer survivorship in the National Cancer Institute. • 2005 Institute of Medicine Report “Cancer Patient to Cancer Survivor: Lost in Transition” published. • 2012 Development of CoC Accreditation Standards requiring Careplans, psychosocial assessment, and patient navigators.

13. Factors Affecting Survivorship Care • Declining number of oncologists as number of survivors continues to climb. • Increased involvement of primary care providers in management of survivors care. • Increased importance of communication and collaboration between oncologists and primary care providers. • Limited research on best way to provide follow-up care for cancer survivors. Medscape, 2013

14. Recommendations From Institute of Medicine (IOM) report “Lost in Transition” • Establish awareness of survivor needs. • View survivorship as a distinct phase of cancer care. • Provide comprehensive care summary and follow up plan. Should be reimbursed. • Use evidence-based systematic guidelines, assessment, and screening tools to identify and manage late effects from cancer/treatment. IOM, 2005

15. Recommendations From IOM report “Lost in Transition” cont. • Quality measures should be developed. • Support demonstration models. • Congress should support CDC development of cancer control plans. • Expand educational opportunities for healthcare providers to address survivor issues. • Eliminate job discrimination, minimize effects of cancer on employment, and support survivors during short-term or long-term inability to work.

16. Recommendations From IOM report “Lost in Transition” cont. • Provide access to adequate and affordable health insurance. • Recognize survivorship as an essential part of cancer care and planned benefits, and payment/reimbursement mechanisms to facilitate coverage of evidence-based care. • Increase and expand support for survivorship care research.

17. Where do we start? “Survivorship must be viewed less as a period of acute symptoms and more as a dynamic, life long process. And just as we prepare for treatment and potential side effects we must also prepare for long term survival… Survival is not a singular aspect of one’s life but rather an accumulation of physical, psychological, sexual, social and spiritual responses to changes which have evolved from the cancer diagnosis and its treatment” Pelusi, 1981

18. Survivorship Care Priorities • Prevention of recurrent or new cancers. • Prevention of late effects from treatment. • Surveillance of recurrent, late effects, or secondary cancers. • Interventions for physical and psychosocial distress from cancer treatment. • Evaluation of concerns of employability, insurance, and disabilities. • Collaboration and coordination of multiple care providers to meet specific survivor’s needs. IOM, 2005

19. How Do We Get This Done? • Comprehensive survivorship care plan that includes: • Follow-up plan for surveillance. • Treatment summary • Collaboration and communication with survivor’s primary care provider. • Health promotion. • Psychosocial support and interventions. • Financial support and education.

20. Surveillance Plan • Guidelines for site specific cancers and stages related to the survivor. • Focus should be on prevention and early detection of recurrent cancer and new cancers. • Additional assessment for late effects from treatment. IOM, 2005

21. Treatment Summary Detailed information on chemotherapy drugs used or radiation doses. • Pathology reports. • Surgical reports. • Most recent scans. • List of potential short-term, long-term, and late effects from treatment. Potential long term effects from disease. IOM, 2005

22. Monitoring for Short-Term Effects • Most often resolving acute side effects from therapy. • Need to ensure not evolving into long-term effect. • Examples would be nausea and/or vomiting.

23. Monitoring for Long-Term Effects • These effects can be experienced during the treatment phase and may last into the survivorship phase. • May require referral to other specialties for continued intervention and assessment.

24. Late Effects • Psychosocial • Medical • Financial

25. Psychosocial Effects • Impact on general quality of life from • Depression • Anxiety • Fatigue • Cognitive limitations • Sleep problems • Pain • Sexual dysfunction

26. Medical Effects • Is affected by: • Co-morbid conditions • Cardiovascular health • Neurologic conditions • Endocrine disease

27. Financial • Future quality of life is affected by: • High out-of-pocket medical expenses • Inability to pay for future medical care • Bankruptcies • Loss of savings • Disability • Employment problems • Insurance denial

28. Health Promotion • Provide preventive care incorporating lifestyle modification: • Exercise • Smoking cessation • Healthy diet • Alcohol cessation • Stress management • Genetic counseling

29. Team Organization • Multi-directional communication between oncologist, primary care provider, patient, and other care-givers • Input from team members to problem solve and support decision making

30. Patients are “paying” for their disease in lots of ways • We haven’t been meeting all of their needs up till now • Once their cancer treatment is done, we used to say goodbye, • In the meantime, support groups have been organized and have been helping • But, survivorship care has been split among many groups • Now, we need to think of the long-term treatment needs of the patient and put everything together

31. We need to offer survivorship programs • “It is not enough that we do our best; sometimes we must do what is required.” Winston Churchill, British statesman 1874-1965

32. Last quote… And cancer patients have been telling us for many years, we need to “Git r done” Larry the Cable Guy, comedian, 1963-