CancerSurvivorship

Cancer Survivorship: Quality of Life FOR Life: 

Cancer Survivorship: Quality of Life FOR Life Susan Leigh, RN, BSN Founding Member & Past President National Coalition for Cancer Survivorship

Objectives: 

Objectives Identify recent reports and resources that focus on survivorship Discuss development of programs and initiatives surrounding survivorship

Review Semantics of Survival: 

Review Semantics of Survival Survivorship as stage – Medical model Survivorship as process – NCCS model Components along a continuum Who is a survivor?

What is Survivorship?: 

What is Survivorship? Is survivorship a stage of survival? Do we have to be cured? Do we have to survive for 5 years? Do we need to have completed treatment? Is survivorship a process of survival? Is it dynamic on on-going? Does it begin at diagnosis? Is it concerned about the quality of our lives?

Survivorship as Process: 

Survivorship as Process National Coalition for Cancer Survivorship (1986) Philosophical concept of survival Starts at the moment of diagnosis and continues until the end of life (Mullan, Carter, Leigh for NCCS)

Different Paths After Treatment Ends: 

Different Paths After Treatment Ends Breast cancer as chronic disease Remission (NED) “Cured?” Maintenance therapy (tamoxifen) Recurrence of initial disease Second primary Secondary malignancy other than primary Premature aging or damaged organs End of life, premature death

Defined as Process: 

Defined as Process Continuum of care that encompasses early stage to metastatic disease, and includes end of life and everything in-between. Deals with different issues throughout different stages of survival (age, cultural, economic, disease, treatment, co-morbidity, etc). Survivorship is the experience of living with, through, or beyond cancer. (NCCS)

Luxury of Labeling: 

Luxury of Labeling Patients Victors Sufferers Survivors Activists Warriors Veterans Thrivers Advocates “The Blessed” Cancer Fighters Cancer Conquerors Cancer “Killers”

“Seasons of Survival”: 

“Seasons of Survival” Acute Stage Diagnosis Treatment Extended Stage Remission Maintenance Permanent Stage Long-term survival “Cure” Final Stage End of Life

Acute Stage: 

Acute Stage Survivor called “Patient” Receiving therapy Support most available Regular access to healthcare team “I know everything will be all right.” “You’re going to be just fine.” “But you look so good. You can’t be sick!” “Don’t be negative. You must think positively!” “

Extended Stage: 

Extended Stage Initial treatments end Remission or maintenance Support diminishes Access to oncology team decreases Learning to decipher symptoms “It’s over. Now forget about it and go back to the way you were.” “You are so lucky that you got a “good” cancer!”

Permanent Stage: 

Permanent Stage Long-term survival Support almost non-existent Few, if any, practice guidelines or standards of care New risk factors “But you’re cured. What more do you want?” “You should be thankful that you are alive.”

Final Stage: 

Final Stage Process of dying Continued access to quality care Adequate pain control Support for family “How can you dare to talk about dying? Survivorship is about living!

Susan Nessim, Can Survive: Reclaiming Your Life After Cancer, 1991, 2000): 

Susan Nessim, Can Survive: Reclaiming Your Life After Cancer, 1991, 2000) “When I left the hospital 25 years ago after treatment for cancer, I wasted no time in charging back into my life. My one desire was to put the experience behind me. But it wasn’t long before I discovered that although I was cancer-free, I certainly wasn’t free of cancer.”

Susan Nessim, Can Survive: Reclaiming Your Life After Cancer, 1991, 2000): 

Susan Nessim, Can Survive: Reclaiming Your Life After Cancer, 1991, 2000) “A series of personal incidents revealed that there was more to overcoming this disease than surviving the hardships of treatment. Instead, the end of treatment marked the beginning of a new and unexpected challenge: adapting to life after cancer.”

Other thoughts…..: 

Other thoughts….. I feel like I have been walking on eggshells for 5 years – waiting for the cancer to return. But now that I have passed this mark, I still don’t feel safe. I have no guarantees. I am still obsessed with lump and bump checks. The week before my annual mammogram – yikes! My anxiety level is off the chart. My family thinks we should all go back to being normal again – like we were before the cancer.

Impacts of Long Term Survival: 

Impacts of Long Term Survival Social/financial Psychological/emotional Spiritual/existential Physical

Slide18: 

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

Social Impacts: 

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

Psychological Impacts: 

Psychological Impacts Fear of relapse or death Chronic anxiety Uncertain future Fear of dependency Survivor guilt PTSD or depression

Spiritual/Existential Impacts: 

Spiritual/Existential Impacts 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 Live through existential crisis

Biomedical Impacts: 

Biomedical Impacts Long-term or lingering effects Continue after treatment ends May be chronic Example: Peripheral neuropathy, fatigue, pain Late or delayed effects Surface months to years later Example: Breast cancer after radiation Rx

Biomedical Impacts : 

Biomedical Impacts Cancer-related (colorectal) Increased of recurrence Need consistent follow-up guidelines Colonoscopy, CEA, imaging, office visits Increased risk of another malignancy Second primary Colon, rectum, small intestine, uterus, cervix, ovary

Biomedical Impacts: 

Biomedical Impacts System-specific Premature aging Compromised immune system (risk of infection) Premature organ damage or failure (ex. Colorectal CA) Infertility from radiation: sperm banking, ovary pinning before surgery Bowel dysfunction: diarrhea, constipation, pain, obstruction Cardiac problems Hearing loss Cataracts Arthritis/osteoporosis

Biomedical Impacts: 

Biomedical Impacts Other Problems Functional changes Erectile dysfunction, ejaculatory difficulties, painful coitus, bowel evacuation Cosmetic changes External stomas, ostomy bag, weight gain or weight loss, lower limb lymphedema Chronic illness Fatigue, lymphedema, peripheral neuropathy

So, What’s Next?: 

So, What’s Next? What can I do to take care of myself? Can I reduce the chances of cancer coming back? Can I learn how to identify symptoms so that problems can be detected early? How can I be WELL after cancer? Do I have the right to advocate for myself?

How to Prepare Survivors: 

How to Prepare Survivors Institute of Medicine Report Follow-up Guidelines Exit Interviews Survivorship Care Plans Surveillance Health Maintenance

Recommendations from IOM Report: Lost in Transition: 

Recommendations from IOM Report: Lost in Transition 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 Provide Provide Care Plan Care Plan

How to Prepare Survivors: 

How to Prepare Survivors Institute of Medicine Report Follow-up Guidelines (ASCO, NCCN, LAF Survivorship Centers of Excellence) Exit Interviews (conversation must accompany plan) Survivorship Care Plans (from IOM) Prevention Surveillance Intervention Coordination

Survivorship Care Plan: 

Survivorship Care Plan Past Treatment summary What happened? Present Current surveillance plan What happens now? Future Risk factors What might happen?

Historical Record: 

Historical Record Treatment Summary Diagnostic records (surgical, scans, x-rays, lab, etc) Treatment records (chemo, radiation, other) Binder, file system

Current Plan: 

Current Plan Identifying individual concerns/issues Short-term (appointments, schedules, procedures) Long-term (medical tests, schedules, risk factors) Medical follow-up (oncologist vs. primary care or other specialists) Psychosocial follow-up (social work, psychologist, family counselors….) Other referrals (PT, OT, dietician, etc)

Prescription for Living: 

Prescription for Living Planning for Wellness Health promoting DO’s and DON’Ts specific to survivor (e.g.,stop smoking, start exercising, use sunscreen, change diet) Individualize plan Improving Quality of Life Individual or group work Utilize complementary therapies Nutrition and exercise plans Stress reduction Supplements

Challenges for Survivors: 

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?

Resources for LT Survivors: 

Resources for LT Survivors Office of Cancer Survivorship (OCS) at the National Cancer Institute Institute of Medicine (IOM) 1-800-4CANCER Facing Forward Series: Life After Cancer Treatment www.cancer.gov Special report on Childhood Cancer Survivorship: Improving Care & QOL From Patient to Survivor: Lost in Transition www.iom.edu

More Resources: 

More Resources Association for Cancer Online Resources (ACOR) National Coalition for Cancer Survivorship (NCCS) Lance Armstrong Foundation (LAF) Listserv for long-term survivors Personal and professional resources www.acor.org Cancer Survival Toolbox: special topic on “after cancer” issues Publications on employment discrimination, insurance Public policy advocacy www.canceradvocacy.org Livestrong website: focus on issues for LT survivors www.livestrong.org

Resources/Books: 

Resources/Books After Cancer, Happiness in a Storm Dancing in Limbo Cancer Fitness: Exercise Programs for Patients & Survivors Harpham, MD Amy Halvorson-Boyd, Lisa Hunter Anna Schwartz

Resources Continued: 

Resources Continued Cancer Survivors Almanac (NCCS) Livestrong Survivor Notebook HEAL Barbara Hoffman, Editor Lance Armstrong Foundation Companion to CURE

Resources Cont.: 

Resources Cont. Complementary Therapies Nutrition & Exercise Movement (Qi gong, tai chi) Meditation, imagery, relaxation Biofeedback Energy therapies (acupuncture, shiatsu, reiki, massage, therapeutic touch) Music, art, poetry Prayer Support groups

Community Resource Centers: 

Community Resource Centers Community outreach Educational programs Support groups Retreats and camps Energy work (massage, reiki, yoga, qi gong, meditation) Equine therapies www.sunstonehealing.net

Who is Doing What?: 

Who is Doing What? City of Hope Survivorship Education for Quality Cancer Care Lance Armstrong Survivorship Centers of Excellence Network ASCO guideline development NCCS Quality Cancer Care Initiative

City of Hope: 

City of Hope Survivorship Education for Quality Cancer Care Competitive application process 100 participants from 50 institutions Goals identified prior to meeting Didactic presentations on all aspects of survivorship Working groups to develop plans Follow-up with COH staff

Lance Armstrong Foundation: 

Lance Armstrong Foundation Livestrong website and survivorship notebook Survivorship Centers of Excellence Network Invited applications from comprehensive cancer centers Development of research-based survivorship programs Must include 3 community partners Independent plus collaborative work

American Society of Clinical Oncology: 

American Society of Clinical Oncology People Living with cancer (plwc) website Quality Measurement & Improvement Committee: Includes chemotherapy treatment summary Defining quality cancer care Survivorship Guideline Sub-Committee: Developing consensus-based follow-up guidelines till evidence is available Finished cardiopulmonary guidelines first

Components of Survivorship Programs: 

Components of Survivorship Programs Educational Advocacy Surveillance Prevention and control Wellness Exercise Nutrition Complementary therapies

Hopes for the Future: 

Hopes for the Future Access to comprehensive follow-up clinics and specialists for adults as well as children More research in the area of lingering 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”