+ Cancer Survivorship; Beyond Treatment MFA Thriving After Cancer (TAC) Adult and Pediatric Cancer Survivorship Clinic C. Tilley

+ Related Articles  Care of the Adult Cancer Survivor (ACP)  Differences Between Primary Care Physicians’ and Oncologsts’ Knowledge, Attitudes and Practices Regarding the Care of Cancer Survivors (JGIM) 06_2011_Article_1808.pdf

+ Many of us are Cancer Survivors 14.5 million US cancer survivors alive as of Jan.1, Estimated incidence of cancers diagnosed in the US in 2015 is 1,658,000 Estimated deaths due to cancer in the US in 2015 is 589, in 3 people will be diagnosed with cancer; 68% will be 5 years survivors 2 GWUH diagnoses around 120 new cases of cancer each month 1. ACS Facts and Figures Siegel, Naishadham, & Jemal.2013 CA:Ca J.Clin 2013; v

+ Who is a Survivor? According to the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship a person is a cancer survivor “from the time of cancer diagnosis and through the balance of his or her life. Family members, friends, and caregivers are also impacted.”

+ Pearls to remember about cancer survivors: The experience is not over when the treatment is over For many people the end of treatment is the start of a new and different beginning fraught with anxiety, symptoms, fear of recurrence, deconditioning and debt Most people have a changed perspective on life and relationships after being treated for cancer Many people struggle with survivors guilt Many people re-experience the discomfort they felt when they got diagnosed every time a friend, family member or neighbor is diagnosed with cancer

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+ What is Survivorship Care?

+ Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.

+ Institute of Medicine In 2006 the IOM published a seminal report titled From Cancer Patient to Cancer Survivor; Lost in Transition Identified gaps in coordinated and comprehensive care Called for care plans to be delivered to all people treated for cancer Called for improved care delivered to patients post treatment Hewitt, Greenfield, & Stovall (2006). From Cancer Patient to Cancer Survivor: Lost inTransition. The National Academies Press: Washington, D.C. (p. 151).

+ American Society of Clinical Oncology (ASCO) Landmark report in 2014: The State of Cancer Care in America Emphasized: providing quality and coordinated cancer care Described projected significant increase in number of new cases of cancer with the aging population (42% increase by 2025) Described the projected) shortage of oncologists (projected deficit of 1,487 physicians over next 10 years) Recommended new quality driven care delivery models and payment models ASCO The State of Cancer Care in America: 2014

+ National Comprehensive Cancer Network (NCCN) Standards for Survivorship Care version Prevention of new and recurrence cancers and other late effects 2. Surveillance for cancer spread, recurrence, or second cancers 3. Assessment of late psychosocial and physical effects 4. Intervention for consequences of cancer and treatment (eg., medical, symptoms, psychological distress, financial and social concerns) 5. Coordination of care between primary care providers and specialists to ensure that all of the survivor’s health needs are met.

+ What does this mean for clinical care?

+ What are the unique needs of cancer survivors?

+ Physical ConcernsEmotional ConcernsPractical Concerns Energy59%Fear of recurrence 80%School73% Concentration55%Grief and identity 60%Employment45% Sexual functioning 46%Personal appearance 62%Debt27% Neuropathy42%Family member risk 51%Insurance18% Pain34%Sadness and depression 51% Lymphedema23%Personal relationships 31% Incontinence22%Social relationships 29% LIVESTRONG (2010). How cancer has affected post-treatment survivors: A LIVESTRONG Report, Assessed online March 1, LIVESTRONG survey n2099

+ ACS Study of Cancer Survivors n 5000 DescriptionSomewhat of a Problem (%) A Severe Problem (%) Less physically able to have sexual intercourse Feeling fearful that my illness will return Fatigue, loss of strength Concern about relapsing Sleep difficulties Stein K, Smith T, Kim Y, et al. The American Cancer Society’s Studies of Cancer Survivors: the largest, most diverse investigation of long-term cancer survivors so far. Am J Nurs. 2006; 106(3):83-85.

+ Guidelines & Resources

+ Survivorship Information for Patients

+ Survivorship Guidelines for Providers and Patients

+ Cancer Rehab an essential piece of cancer care; currently underutilized

+ Diet & Exercise Guidelines

+ Weight Management After Cancer

+ Possible Late Effects of Cancer Treatment

+ Late Effects of Chemotherapy Fatigue Cardiomyopathy Depression Peripheral Neuropathy Infertility (adults) Renal toxicity Mild cognitive changes Gonadal failure / dysfunction Osteonecrosis Dental abnormalities Loss of BMD; risk of osteopenia Secondary cancers (AML, myelodysplasia, bladder cancer)

+ Late Effects of Surgery Pain Loss of range of motion Loss of function Altered appearance Loss of sensation Lymphedema Scarring / strictures / obstruction

+ Late Effects of Radiation Altered appearance Pain Pneumonitis Scar tissue Increased risk of secondary cancer (breast, skin, sarcoma) Increased risk of Cardiovascular disease Lymphedema Thyroid dysfunction Incontinence Erectile Dysfunction Neurocognitive deficits Dental abnormalities Cardiac toxicity Reduced BMD/ scoliosis /kyphosis Secondary cancers in area of radiation

+ Late Effects of Hormone Therapy Loss of libido Depression Loss of Muscle Loss of bone density Vaginal Dryness Arthralgias Hyperlipidemia Cataracts Blood clot Uterine Cancer Weight gain

+ Emotional and Practical Late Effects Fear of recurrence Depression Anxiety Changed and/or strained relationships Altered outlook on life Change of sexual function Debt Loss of income/job Lack of ability to work or return to work

+ How does the clinic work?

+ MFA’s Survivorship Clinic Goals Thoroughly address question and concerns each patient has regarding life after cancer treatment Provide evidenced based symptom management of the various physical and emotional long term and late effects of cancer treatment Ensure each patient understands what the appropriate cancer surveillance recommendations are for them Educate each patient about their potential long term risks due to their treatment and how to minimize their risk through healthy lifestyle choices and habits Educate residents and other healthcare workers about the unique needs of cancer survivors Coordinate care and communicate immediate patient issues and potential late effects of treatment to PCP and entire treatment team through verbal communication and by sharing the survivorship the care plan

+ What Patients Say About The Survivorship Clinic “very helpful and comforting. I was able to get a little more organized and gained a good understanding of what I need to do.” “extremely helpful. After a long time and being a multi-cancer survivor this program opened up my life again. This program has caused me to reach out even more for what I need to go forward. Thank you.” “very informative. You really care about the patients. It’s obvious!” “informative, helpful, not scary or overly intrusive. Responsive to my questions and friendly!!” “exceptional. I was able to talk about my concerns. The team was very personal. They gave me helpful guidelines for my diet. I think every survivor should participate.”

+ To Learn More Cancer Survivorship E-learning Series for Primary Care Providers Cancer Survivorship Training for Healthcare Professionals Cancer Survivorship in Primary Care: Resources for Primary Care Providers City of Hope’s Preparing Professional Nurses for Cancer Survivorship Care ASCO Survivorship Compendium and Tools research/cancersurvivorship