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Survivorship 101

Learn about survivorship, the goals of the National Coalition for Cancer Survivorship, the increasing number of cancer survivors, and the need for survivorship care. Hear from cancer survivors about their experiences and challenges.

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Survivorship 101

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  1. Survivorship 101 Name Member, Speakers Bureau Elevate Program National Coalition for Cancer Survivorship Date

  2. Speaker Introduction

  3. Survivorship 101 - Goals

  4. Survivor NCCS’ definition of a survivor is from the time of diagnosis through the balance of life. NCCS expanded its definition to include family, friends, and caregivers.

  5. The Number (and Age) of Cancer Survivors is Increasing • 2018: 16.5 million cancer survivors in the United States • 2040: NCI estimates 26 million cancer survivors, with 73% Age 65+, and only 8% under age 50 63%of cancer survivors in the U.S. are age 65 and over Sources: https://seer.cancer.gov/statistics/types/survival.html, https://www.cancer.gov/news-events/cancer-currents-blog/2016/cancer-silver-tsunami

  6. Estimated and Projected Number of Cancer Survivors in the United States from 1977-2022 Source: de Moor et al, Cancer Epidemiol Biomarkers Prev 2013

  7. Survivorship Movement • In 1986, a group of cancer survivors convened, with a vision to create a nationwide awareness of cancer survivorship, a concept that did not exist in the scientific literature. They created the National Coalition for Cancer Survivorship • NCCS founders changed the lexicon of what it meant to be a person with cancer from “victim” to “survivor”and launched the survivorship movement • NCCS convened experts to develop the “Imperatives for Quality Cancer Care,” which led to the creation of the Office of Cancer Survivorship at the National Cancer Institute

  8. The Need for Survivorship Care • Many of the 16 million Americans that are cancer survivors live with long-term physical and emotional side effects from their cancer treatment • A key recommendation from the 2005 IOM report “Lost in Transition,” was that cancer survivors should receive an individualized survivorship care plan(SCP) upon completion of treatment. • Fourteen years later, SCPs and comprehensive survivorship programs are still evolving.

  9. Survivors on Survivorship “Survivorship changed over time from a burden, to a privilege, to a responsibility.” Sarah Noonan Ovarian Cancer survivor

  10. Survivors on Survivorship “The job of the oncology medical team is to put out the fire, stop the emergency, and save the patient’s life. We’re doing a better job of that all the time but now we owe it to the survivor to make sure that this saved life is a life worth living.” Diane Hedistian Three-time Breast Cancer survivor

  11. Survivors on Survivorship “As time passes, the emphasis for most of us ‘long-termers’ shifts from length of life to quality of life.  This puts a different spin on those who cling to the length of one’s years as a measure of successful treatment, rather than how those years are lived.” Ellen Stovall Three-time survivor, Former NCCS CEO 1946-2016

  12. Insert YOUR Story • Key points about diagnosis and treatment • Survivorship – what have you learned? • Advocacy roles Add Photo!

  13. Key Messages #1: It’s not over when it’s over! Cancer survivorship brings its own set of unique challenges

  14. Why is Transitioning to Recovery So Stressful? • Fear that the cancer will return • Concern about ongoing monitoring • Loss of a supportive environment • Social demands: ‘re-entry’ problems • Diminished sense of well-being due to treatment effects

  15. Key Messages #2: Cancer and its treatment can affect virtually every aspect of an individual’s life

  16. Quality of Life Model Applied to Cancer Survivors Physical Well Being and Symptoms Functional Activities Strength/Fatigue Sleep and Rest Overall Physical Health Fertility Pain Psychological Well Being Control Anxiety Depression Enjoyment/Leisure Fear of Recurrence Cognition/Attention Distress of Diagnosis and Control of Treatment Cancer Survivorship Social Well Being Family Distress Roles and Relationships Affection/Sexual Function Appearance Enjoyment Isolation Finances Work Spiritual Well Being Meaning of Illness Religiosity Transcendence Hope Uncertainty Inner Strength Ferrell, BR and Grant, M. City of Hope Beckman Research Institute(2004)

  17. Social Effects • Isolation • Appearance • Changes social roles & relationships • Distress within family unit • Sexuality issues (physical, emotional, social) • Employment discrimination/problems • Insurance and financial concerns • Inequalities in minority populations

  18. Psychological Effects • Fear of recurrence or death • Chronic anxiety • Uncertain future, control • Fear of dependency • Survivor guilt • PTSD or depression • Chemobrain (cognition)

  19. Spiritual/Existential Effects • New sense of “normal” • Who am I now? • Meaning of illness and life after cancer • Changing sense of hope and future • Relationship with organized religion and God • Transcendence – going beyond, surpass, exceed • PTG (post traumatic growth)

  20. Physical Effects Long-term or lingering effects • Fatigue • Pain • Changes in bowel or bladder function • Peripheral neuropathy Late or delayed effects • Recurrence/second cancer • Osteoporosis • Cardiac problems • Lymphedema

  21. Health Concerns After Cancer

  22. Caregivers

  23. Key Messages #3: Planning for recovery and life after cancer is important

  24. Lost in Transition Recommendations • Raise Awareness • Provide Care Plan • Develop Clinical Practice Guidelines • Define Quality Health Care • Overcome Delivery System Challenges • Include as Public Health Concern • Improve Professional Capacity • Address Employment-Related Concerns • Improve Access to Health Insurance • Invest in Research

  25. Essential Components of Survivorship Care • Prevention of recurrent/new cancers and late effects • Surveillance for cancer spread, recurrence, or 2nd cancers; assessment of late effects • Intervention for consequences of cancer treatment; symptoms such as pain and fatigue; psychological distress; financial concerns • Coordination between specialists and primary care providers to meet the needs of survivors • Health Promotion to encourage healthy habits and enable people to increase the control over their health and its determining factors

  26. Survivorship Care Plans

  27. Community Based Resources

  28. Patients Want a Plan to Guide Their Care “It was a very frightening time for me. I knew nothing about the process after a lumpectomy and removal of my lymph nodes. I was sent home with no instructions other than to visit my doctor to get results about the lymph nodes. I was in pain and miserable. I so desperately needed a plan for recovery as well as what to expect from my treatment.” - Two-Time Breast Cancer Survivor

  29. Survivorship Care Plans are Important to Patients “Cancer is not an acute disease. It’s a lifelong problem. Survivorship care plans [are] extremely important. The idea is that [patients] could go to a primary care doctor, who would then be able to read the survivorship care plan and carry out the screening that needs to happen. The goal to catch things like heart problems and high blood pressure early so that we can intervene and hopefully give [patients] a healthier life for a longer period of time.” Greg Aune, MD, PhD Pediatric Oncologist & Researcher UT Health Science Center San Antonio 25-year cancer survivor

  30. Survivorship Care Plans are Important to Patients • If you know, add a quote from a member in the community.

  31. Key Messages #4: Healthy lifestyle has an important role during and after treatment

  32. Why the Interest in Survivors’ Health Behaviors? • Growing evidence base of role of exercise • Growing number of cancer survivors who… • Are living longer • Are older, and also aging • Often gain weight, stop exercising during treatment • Are at risk for a number of co-morbid health conditions (and may also have a history of others) • Can benefit from health promoting inventions • Many will not die of cancer!

  33. What Can Survivors Do? • Ask for and have your own survivorship care plan • Discuss this with your oncology and also primary care providers • Update this regularly; it is a living document! • Be sure your plan addresses “whole person” well-being and care

  34. Challenges for Survivors • How do they identify risks and problems? • Who will assess cancer-related concerns? • Will insurance cover screening, follow-up, diagnostic tests, care? • How do they find a specialist who will take their concerns/symptoms seriously? • What resources are available for LT survivors?

  35. What do Survivors Need? • Access to health care providers who have expertise in survivorship care • More research in the area of long-term and late effects • Systematic follow-up and inclusion in databases to identify risks • Focus on “wellness” and improved quality of life • Insurance coverage for rehabilitation, visits to specialists, mental health care, end of life care • Shift from “Surviving” to “THRIVING”

  36. NCCS Cancer Policy & Advocacy Team (CPAT) • Advocate engagement, training, and action program focused on improving cancer care • Symposium in Washington, DC in June with two days of training and a Hill Day • Webinars and conference calls to share key policy issues, advocacy best practices • Online forum • Email updates with advocacy opportunities To learn more: www.canceradvocacy.org/cpat

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