Cancer Survivorship and Quality for Life :

Shaken, Stirred, Moving On

Brad Zebrack, Ph.D., MSW

University of Michigan School of Social Work

Shaken

“Life on hold”

“It’s the ‘good’

cancer”

“I know how you feel.”

“Victim to Victor”

Positive Attitude

Be a survivor

What is Cancer?

Dis-ease vs Illness

Cancer as: Bi-ology

Path-ologyPhysi-ology Cancer as an

experience of life

What is Cancer Survivorship?

Medical PerspectiveFocus on survivalReduce symptoms

Prevent long-term effectsManage symptoms

Off-treatment (e.g., 2 yrs, 5 yrs)

Cancer Survivorship“Seasons of Survival”

Acute phaseRecovery phase

Long-term survivalDisease-free

Cancer as a chronic diseaseEnd-of-Life

Patient Perspective

The notion of living with, through, or beyond cancer.

Susan LeighSurvivorship Consultant3-time cancer survivor

Cancer Survivorship1.5 million cases diagnosed each year

12 million cancer survivors in the US

2/3 of all cancer patients expected to live at least five years

While these statistics indicate increased length of survival for individuals diagnosed with cancer, they give no indication of the quality of life.

How Has Cancer Affected Your Life?

Life Changes

“This is what I picture…this is really weird, I see, like, a grave, and that’s the person that died, on August 4th. She’s gone. Because you know, my life had to change, I had cancer and I can’t go back there, I can’t go in the past, so it’s like, she’s gone.”

Miki, 21

Diagnosed with

leukemia at age 18

Impact of Cancer

Stirred

Not quantity but quality

Physical Well-being

Emotional Well-being

Spiritual Well-being

Social Well-being

Physical Well Being

“It [cancer] has taken a lot of things away from me. I used to ski, play golf and tennis, and physically I also have a bone disorder now because of all the drugs. And there’s resentment that those things were taken away from me.”

“I’m so scarred up and everything is out of place. That is really hard for me to accept.”

Physical Well-BeingBODY CHANGES HEALTH AWARENESS

Energy not returned

My body cannot do what it did before

Feel disfigured

Wear clothing to cover up

More concerned about my health

More aware of physical problems and changes

Take better care of self

Emotional Well-BeingPOSITIVE FEELINGS NEGATIVE FEELINGS

Sense of pride

Learned something about self

More confidence

Desire to give back to others

Angry about having cancer

Feel guilty for being responsible for getting cancer

Made me feel old

Feel guilty for not having been available to family

Emotional Well-BeingMEANING OF CANCER SOURCE OF WORRIES

The most difficult experience of my life

I wonder why I got cancer

Cancer is reason to make life changes

Gave me direction in life

Worry about my health

Worry about cancer coming back or getting another cancer

New symptoms make me worry about cancer coming back

Social Well-BeingRELATIONSHIPS

LIFE INTERFERENCES

Higher value on relationships than before

Feel special bond to people with cancer

Paying attention to health interferes with my life

Having had cancer keeps me from activities I enjoy

Cancer-related symptoms interfere with my life

Spiritual Well-BeingPOSITIVE OUTLOOK NEGATIVE OUTLOOK

Realize time is precious

Strengthened religious faith or sense of spirituality

Learned something about life

Feel unsure about my future

Worry about my future

Afraid to die

Feel like time in my life is running out

Two Faces of the Cancer Experience

Haase & Rostad, 1994

Movin’ On!

A LONG TERM SURVIVOR

“While the cancer is not something I would want to do again it is not something I would want to erase from my life. It has taken some stuff away, but what it has added has completely overcome anything that might have been taken away.”

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Thriving“Those who thrive after cancer are able

to put life and death into perspective and consequently create a special niche for their cancer experience within their personal life history.”

Susan Leigh3-time cancer survivor

Co-founder, National Coalition for Cancer Survivorship

Wei-jiCRISIS =Danger + Opportuni

ty

EMERGENT THEMES OF GROWTH/THRIVING(Their stories)

Greater strength, via recognition of vulnerability and struggle

“What does not kill us makes us stronger”

Greater compassion and empathy

Psychological maturity

New life priorities and outlooks

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STRENGTHBecause it’s a strong, long fight, with

so many emotions involved, you have to keep a clear head and a good outlook the whole time to be fighting something. I think just that experience alone made me stronger.

I definitely felt stronger after having gone through it all. Since I got through this I can get through anything. 32

GREATER COMPASSION/EMPATHY

I think overall it made me more appreciative and maybe more sensitive. By sensitive I mean understanding how other people can feel. Because of the fact that I had to deal with having an artificial eye, and people making fun of it, has made me more understanding and accepting of people with disabilities.

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PSYCHOLOGICAL MATURITY

Cancer made me more mature. It just made me grow up. I had to deal with things that other people didn’t.

The experience made me more mature, more than older guys. I’m serious about what I say and do and have no reason to play around. I know I’m mortal, as funny as that sounds. A lot of people are living for the day, which is great, but I don’t know as though they appreciate what they’ve got.

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NEW PRIORITIES AND OPTIMISM

Even though cancer was really bad I learned a lot about what’s important in life. Like money’s not important to me anymore. I just want to be happy and have someone to love and love me. I’m going to be a teacher, not a high paying lawyer or something.

Materialistic things don’t matter a lot – they’re nice but it’s not the end of the world if you don’t have it.

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CANCER IS A DOUBLE-EDGED SWORD

Gains and losses

Growing up ‘faster” perhaps offset by loss of childhood

Hope and fear – anxiety/sadness and appreciation of life

Celebrations of cure or going off treatment, but uncertainty

Balancing of loss and gain

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MAKING SENSE OF CANCERAn active quest or journey to make sense of a mystery/challenge

Developing a story that makes sense (positive meaning) of the cancer experience

Fitting “my/our cancer story” into a larger life story

Sharing (and testing and revising) my/our story with supportive communities of family, friends, other survivors, publics

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Becoming an Advocate

“Knowing as much as possible about your disease, its treatments, and how its potential effects on your

body can empower you to take charge of your health and help you make the most of your

survivorship.”

Young Adult Survivors Conference (YASC)

Young Adult Survivors Conference (YASC)Our GoalsAddress

survivorship issuesProvide education

and opportunity to tell one’s story

Build bridges of support among young adult cancer survivors

Their GoalsHave funMeet other

survivorsUnderstand more

about their cancer and potential late effects

Learn about how to “tell my story so that it will help others.”

Advocacy Training

Personal AdvocacySelf-advocacy: Where it all begins

You and Your DoctorForget about Waldo: Where are those Resources?

Advocacy Training

Mentor Advocacy: Advocating for Others

Becoming a MentorDo’s & Don’t of Public SpeakingEstablishing and Maintaining Connections: A

Gateway to Community-Building

Advocacy Training

Community-National AdvocacyAdvocating at the State and National LevelGetting Involved in Public PolicyNetworking within the Survivorship

Community

I joined a community of survivors and met people I expect will be good friends. I also learned a tremendous amount about advocacy and feel much better equipped to get involved on state and national levels. I have been given the tools to begin to use my experiences to advocate for greater resources, and I expect that will also greatly increase my sense of satisfaction in my life.

Advocating for OneselfAdvocacy gives you some stability and a

feeling of regaining some control in your life

Advocacy is confidence building in the way it helps you face challenges that seem insurmountable

Advocating for OneselfAdvocacy can improve your quality of

life

Advocacy for yourself may be the difference that turns feeling hopeless and helpless into feeling hopeful.

The Cornerstone of Survivorship

“Regardless of the type of cancer or the extent of survival, all persons diagnosed with cancer must manage the enduring and complex ways in which cancer transforms the self and everyday life.”

Betsy Clark, Former President Ellen Stovall, Executive Director

National Coalition for Cancer Survivorship

Shaken-Stirred-Moved On

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