Survivorship. - Norman Vincent Peale

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2 Survivorship Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see possibilities - always see them, for they re always there. - Norman Vincent Peale

3 What is a survivor? A person is considered to be a survivor from the time of a cancer diagnosis until the end of life.

4 Seasons of Survivorship In 1985, cancer survivor Fitzhugh Mullan, MD, published an article about his own cancer experience called Seasons of Survival: Reflections of a Physician with Cancer in The New England Journal of Medicine. Dr. Mullan identified what he called seasons of cancer survivorship Acute Survivorship; diagnosis and initial treatment Extended Survivorship; time of watchful waiting with celebration, uncertainty, and transition Permanent Survivorship; the season of gradual confidence that there would be a future free of cancer

5 History In 1986, Dr. Mullan helped to create the National Coalition for Cancer Survivorship (NCCS) which advocates for survivors. In 1996, the Office of Cancer Survivorship was established at the National Cancer Institute (NCI) To focus on research into the issues facing those with cancer from the day of diagnosis and for the remainder of life.

6 History In 2004, the Centers for Disease Control, and The Armstrong Foundation collaborated to publish A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies Goal of identifying and prioritizing cancer survivorship needs to improve the QOL for those living with, through, and beyond cancer. Expanded the definition of survivor to include not only those living with cancer but their families and caregivers

7 History In 2005, the Institute of Medicine published From Cancer Patient to Cancer Survivor: Lost In Transition. The aim was to: Raise awareness of the medical, functional, and psychosocial consequences of cancer and its treatment Define quality health care for cancer survivors and identify strategies to achieve it Explores social and economic hardships facing cancer survivors related to, i.e. insurance coverage and employment discrimination Improve the quality of life of cancer survivors through policies to ensure their access to psychosocial services, fair employment practices, and health insurance

8 History Authors made 10 recommendations which include: Recognizing survivorship as a distinct phase of cancer care Ensuring the delivery of appropriate survivorship care Expanding research efforts in survivorship Eliminating discrimination and adverse effects of cancer on employment Ensuring access to good health insurance

9 Seasons of Survivorship Revisited In 2008, Kenneth Miller, MD, director of the Lance Armstrong Foundation Cancer Survivorship Program at Dana-Farber Cancer Institute wrote Seasons of Survivorship Revisited. Transitional survivorship - the time immediately after treatment ends, when celebration is blended with worry and loss as the patient pulls away from the treatment team Extended survivorship after the transition period, which includes those who are living with cancer as a chronic disease as well as those in remission because of ongoing treatment Permanent survivorship the final stage, includes those who are in remission and asymptomatic and those who are cancer-free but not free of cancer because of chronic late and long-term health or psychosocial problems.

10 The Numbers Estimated 14.5 million cancer survivors living in the U.S. Estimated over 18 million survivors by 2022 Estimated more than 1 million melanoma survivors living in the US Estimated national medical expenditures associated with cancer survivors ranges from $25.2 to $48.1 billion for those age 18 to 64 years Estimated annual net productivity loss among cancer survivors ranges from $9.6 to $16.0 billion among those age 18 to 64 years

11 Fear of Recurrence or Second Melanoma A normal part of survivorship is the fear that the melanoma will recur or a new melanoma will be found This is typical with late stage melanoma patients but is something early stage melanoma patients deal with as well Frequent doctor visits can be a constant and stressful reminder of their melanoma risk Recommendations Acknowledge the survivor s fear and help them find ways to deal with it, i.e. social worker or therapist Educate the survivor on how to perform monthly a skin exam and practice sun safety behaviors

12 Scarring Survivors have insecurities about their scars especially in a culture that values youthful, healthy skin Difficulty wearing certain clothing Can make intimacy challenging People may feel guilt or shame for worrying about a scar when they think they should just be happy to be alive Important to validate their feelings and assist in minimizing the scar, when possible

13 Lymphedema Effects to survivor may include Severe swelling and/or pain, depression, and restriction of movement which prohibits the survivor from participating in activities - both past and future ones Recommendations Exercise (remind survivor they shouldn t be strenuous), wrapping arm/leg to encourage lymph fluid to flow back toward the trunk of their body), massages, compression garments, or surgery May be appropriate to make a referral to a social worker, a mental health specialist, and/or a support group

14 Fatigue Effects to survivor may include Problems sleeping, depression, deconditioning Recommendations Taking short naps or breaks rather than a long rest, moderate exercise, asking family/friends to help with the things they find tiring or too hard to do May be appropriate to make a referral to a therapist, or a dietician, or to write a prescription Look for signs of depression which can contribute to fatigue

15 Depression and Anxiety Approx. 30% of patients in active treatment experience clinically significant psychological distress during the treatment phase of their disease About 20% of post-treatment patients experience depression Recommendations Look for signs and symptoms of depression and anxiety. Ask survivor questions. May be appropriate to make a referral to a therapist Suggest a support group or social worker at the hospital

16 Changing Roles in Family Cancer often changes family roles during the course of treatment Even after treatment, it may be impossible to return to old routines The breadwinner may no longer be able to work as many hours or at the same job The survivor may be unable to fulfill the same role in the family, i.e. one partner picked up around house while other paid bills Fatigue, depression or physical difficulties may make these routines impossible

17 Changing Roles in Family Recommendation Suggest they talk to a therapist with or without their partner

18 Sexuality and Intimacy About half of cancer survivors experience posttreatment sexual difficulties due to, i.e. depression, fatigue, pain, erectile dysfunction, or vaginal dryness This is something your patients may not be talking to you about Recommendations Make a referral to a therapist or a social worker if the couple can t discuss this among themselves Suggest an over-the-counter treatment, write a prescription, or make a referral to a physician who can alleviate the pain

19 Fertility Issues This is an issue in survivors of child bearing age People under 45 account for 25% of all melanoma cases Melanoma is the third most common cancer among women aged years and the second most common cancer in men aged years Recommendations Need to this discussion with the patient before treatment so that he/she knows their options to preserve fertility Cannot make assumptions People are having children later in life

20 How Do We Address Issues Facing Survivors Survivorship care plans are highly recommended. They have two distinct components. Treatment summaries which should include: diagnostic tests performed, tumor characteristics such as site, stage, and grade, date of treatment initiation and treatment modalities used Follow-up care plans which should include: the expected course of recovery from toxicities, possible long-term and late effects, genetic counseling (as appropriate) and resources available

21 Treatment Summary

22 Treatment Summary

23 Follow-up Care Plan

24 Follow-up Care Plan

25 Problems The management of long term side effects, both physical and psychological, are unclear. OS for melanoma patients is improving with new drugs, immunotherapies and targeted therapies, but the long-term effects are unknown There is a larger pool of new patients who had previously had not received therapy for their melanoma and are now receiving them; Stage III patients

26 Problems It is unclear when a care plan should be implemented. Now with immunotherapies and targeted therapies, there is possibly indefinite dosing. So when should a care plan be developed? There are few survivorship programs to help support survivors.

27 Suggestions Moving Forward Survivorship care for patients with cancer requires a multidisciplinary effort Needs to be a dialogue to decide who will lead the ongoing care, and who will be part of the team If the team leader is someone other than an oncologist, what can be done to ensure that person is equipped to provide follow-up Speak with your patient. Don t make assumptions that others are addressing survivorship issues Suggest to the survivor they should keep a personal health record

28 AIM at Melanoma Website

29 THANK YOU! Sam Guild

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