Jennifer Witt RN, MSN, OCN Stoddard Care Coordinator

Objectives: Identify the who, what, when, where, why & how of cancer survivorship

Cancer Survivors - Who are they?

There are 13.7 million cancer survivors in the

United States 59% are at least 65 years of age

• 68.3% of newly diagnosed cancer

patients expected to survive beyond 5 years after diagnosis (

• Special populations

• AYA & Elderly • Advanced stage/recurrence

Bellury, L., Ellington, L, Beck, S. et al (2013). Older breast cancer survivors: can interaction analyses identify vulnerable subgroups? A report from the ACS studies of cancer survivors. Oncology Nursing Forum, 40(4) 325-330.

Redefining ‘Survivor’…

“…considered a cancer survivor from the time of diagnosis through the

balance of his or her life.”

2013 NCCN Clinical Practice Guidelines: Survivorship; National Coalition for Cancer Survivorship; NCI Office of Cancer Survivorship

Which way do I turn? What’s next?

Late vs. Long Term Effects

Personal Growth & Positive Changes

“…the truth is that cancer was the best thing that ever happened to me. I don’t know why I got the illness, but it did wonders for me and I wouldn’t walk away from it. Why would I want to change, even for a day, the most important and shaping event in my life?”

Lance Armstrong (2000) It’s Not About the Bike

STRETCHING 16 February 2003 I have my moments of such sadness. They hit me quite suddenly. My loss of innocence. The innocence that made me feel that cancer couldn't happen to me.

Redgrave, L. & Clark, A. (2004). Journal A Mother and Daughter’s Recovery from Breast Cancer. New York: Umbrage Editions, Inc.

The “New Normal” I didn’t ask for… What I miss is society. Meals are when we most easily

meet with friends and family. They’re the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done – certainly most of our recreational talking. That’s what I miss.

What’s sad about not eating is the experience, whether at a

family reunion or at midnight by yourself in a greasy spoon under the L tracks. The loss of dining, not the loss of food. Unless I’m alone, it doesn’t involve dinner if it doesn’t involve talking. The food and drink I can do without. The jokes, gossip, laughs, arguments and memories I miss.

Roger Ebert Life Itself A Memoir, 2011

“From a tiny seed the acorn becomes a towering oak. It symbolizes the hope of things to come as well as represents the strength found deep inside, yet to be recognized. It is said that the strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for existence against the winds and rains and the scorching sun.”

Cancer Survivor Myths

“let the pain be pain, not in the hope that it will vanish but in the faith that it will fit in, that it

will find its place in the shape of things and be then not any less pain, but true to whatever its

form is” -From the poem Reconciliation

Author Unknown

Goals of the NCI Office of Cancer Survivorship Established in 1996 Enhance the length and quality of survival of all

cancer survivors Support research that helps us understand,

prevent, or reduce adverse physical, psychosocial, and economic outcomes associated with cancer and its treatment

Educate professionals about issues related to cancer survivorship

Institute of Medicine and National Research Council of the National Academies. (2006). From Cancer Patient to Cancer Survivor: Lost In Transition. Washington, D.C. The National Academies Press.

NCI Survivorship Goals (continued) Identify, examine, prevent and control adverse

cancer-treatment-related outcomes Provide a knowledge base regarding optimal follow-

up care and surveillance of cancer survivors Optimize health after cancer treatment

National Cancer Institute. (2008). Survivorship Education for Quality Cancer Care. City of Hope, Los Angeles, CA.

Four Essential Components of Survivorship Prevention of recurrent and new cancers and of

other late effects Surveillance for cancer spread, recurrence, or

second cancers; assessment of medical and psychosocial late effects

Intervention for consequences of cancer and its

treatment

Coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met

Institute of Medicine and National Research Council of the National Academies. (2006). From Cancer Patient to Cancer Survivor: Lost In Transition. Washington, D.C. The National Academies Press.

Survivorship Care Plan (SCPs) Consists of treatment summary & care plan Summarizes details of diagnosis &

treatment Provide information on follow-up care, late

& long term side effects Resources addressing potential

psychosocial & practical issues

Jackson, J. , Scheid, K., & Rolnick, S. (2013) . What’s next? Life after cancer treatment. Clinical Journal of Oncology Nursing

Tools Used to Optimize Survivorship Quality of Life Patient Assessment Questionnaire Summary of Cancer Treatment Follow-Up Care Plan (OncoLink®) Cancer Survivorship Interview Community Partnerships

Institute of Medicine From Cancer Patient to Cancer Survivor: Lost in Transition 2006 Lester, J.L. & Schmitt, P. (2012).Cancer Rehabilitation and Survivorship: Transdisciplinary approaches to Personalized care (Eds.). ONS.Pittsburgh, PA.

Online Resources for Survivorship Planning http://www.oncolink.org (LIVESTRONG™ care plan & treatment

summary) http://www.cancer.net (American Society of Clinical Oncology) http://www.nccn.org (Disease specific treatment follow-up guidelines

& Survivorship) http://www.mskcc.org/cancer-care/survivorship (Memorial Sloan-

Kettering Cancer Center sample care plan & treatment summary) http://journeyforward.org Minnesota Cancer Alliance http://mncanceralliance.org Children’s Oncology Group Leukemia & Lymphoma Society American Cancer Society www.cancer.org National Coalition for Cancer Survivorship www.canceradvocacy.org www.cancersurvivorshiptraining.com (University of Kansas Cancer

Center)

Survivorship Mobile Apps The Cancer Treatment Support App The Pocket Cancer Guide (developed by NCCS) My Cancer Manager Cancer.Net mobile app (developed by ASCO) AYA Healthy Survivorship (developed by CTxCARES) Survivor (developed by UMCG) Livestrong CancerGuide & Tracker for the iPad

Minnesota Cancer Alliance SCP Feedback N%

Help manage post-treatment health information

89

Easy to use 78

Improve understanding of post-treatment care

74

Improve communication with healthcare providers

74

Will continue to use the SCP to manage care

74

Help identify health concerns 67

Jackson, J., Scheid, K., & Rolnick, S. (2013). What’s next? Life after cancer treatment. Clinical Journal of Oncology

“I was made aware of many opportunities including support groups and classes…I have used the 12 week program at the Y and plan on joining when my 12 weeks are up.” -K.T. 65 y.o breast cancer survivor “It started me on an exercise program that has helped me with endurance & weight management. It has been reassuring knowing that I have someone to turn to for necessary resources.” -M.T. 65 y.o endometrial cancer survivor “Survivorship counseling needs to start at diagnosis.” -R.B. 63 y.o prostate cancer survivor “The summary has been very helpful to present to healthcare professionals…it’s like having a health plan for the future.” -J.S. 38 AML survivor “I was able to talk about things that I hadn’t with anyone else.” -Anonymous

Comments from JSCC Survivorship Program

2013 Survivorship Interviews Referrals Made (January 1, 2013 to current)

N= 77 patients

Support groups 40

LiveWell @ the YMCA 33

Life Beyond Breast cancer class 26

Breast Cancer Nutrition class 21

Clinical Psychologist 20

Dietician 19

Other (ACS, free skin screening, EOL planning, legal aid, smoking cessation)

9

Genetics counseling 7

Social worker (financial) 6

Smoking cessation 2

Leukemia & Lymphoma Society 2

Lymphedema therapy 1

Total 186 Referrals!

2013 NCCN Cancer Fatigue Guidelines

“Exercise programs appear to have the greatest benefit in reducing fatigue experienced by cancer survivors” Weight lifting Aerobic exercise Yoga, pilates *150 minutes of moderate-intensity activity/week *2-3 weekly sessions of strength training National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology. Cancer-related fatigue V.1.2013 Schwartz, A.L. (2009). Oncology Nurse Edition. Vol 23 (8), pp 27-34.

Future Implications & Needs • 2015 expectation by

American College of Surgeons Commission – Standard 3.3 for Survivorship Care Plan (SCPs)

• Complex financial issues • Unmet needs of AYA survivors • Specific needs of elderly • Specific needs of advanced

metastatic cancer patients • Sexuality concerns • Continued demands to address

psychosocial distress that patients & caregivers experience

Lessons from my Patients: Steps to Improving Life after Cancer

• Choose Your Attitude • Find Courage to Change • Believe in Second Chances • Share Your Story • Maximize Support

Choose Your Attitude

“The barn’s burnt down, now I can see the moon.” 17th century Japanese poet

“Finally, Mr. Gehrig, if I may steal your thunder: Today, I am the

luckiest person in the world” L. Larson, 11/14/08

Find Courage to Change

Believe in Second Chances

“Do not be afraid to feel the light and warmth on our faces again…Do not feel

guilty to feel joy or choose happiness…Remain vulnerable to love.”

-John Brantner

Communicate: Your Story is Essential

“whatever we receive we must share. When we endure an experience, the experience cannot stay with me alone. It must be opened; it must become an offering, it must be deepened and given and shared”

“our stories are essential – essential to memory. I

believe that the witnesses, especially the survivors, have the most important role. They can simply say, in the words of the prophet,

I was there.”

Elie Wiesel

Maximize Support

Help us to be “God’s Language” to others -Rabbi Harold Kushner

Co-Survivors need support too…

CELEBRATING Monday, 10 March 2003 The birthday was wonderful. To live in my memory of all those weird, emotional, happy, strange times that have happened to me in the new life

SURVIVOR Friday morning, 28 March 2003 It's all about order I've decided. The pleasure I get and the sense of my life in place, amidst the things I can't control. Like finding a big lump in my otherwise healthy body.

Redgrave, L., & Clark, A. (2004). Journal A Mother and Daughter’s Recovery from Breast Cancer. New York: Umbrage Editions, Inc.

“And yet, I kept waking up…I wasn’t what I once was, but as I stopped worrying about the future, I actually began to believe that I might have one.

I started to enjoy myself again.”

Recalculating…

Interview with Sylvia Boorstein, On Being with Krista Tippett. March 29, 2012 National Public Radio

“It’s about what is Next…”