Presentation by Brad Zebrack, PhD, MSW, MPH, for Providence Cancer Survivor Celebration on June 2, 2012 in Olympia, Wash.

1. Brad Zebrack, Ph.D., MSW
University of Michigan School
of Social Work

2. Shaken

3. “Life on hold”
“It‟s the „good‟
cancer”
“I know how
you feel.”

4. “Victim to
Victor”
Positive
Attitude
Be a survivor

7. What is Cancer?

8. Dis-ease vs Illness
Cancer as:
Bi-ology
Path-ology
Physi-ology Cancer as an
experience of life

9. What is Cancer
Survivorship?

10. Medical Perspective
Focus on survival
Reduce symptoms
Prevent long-term effects
Manage symptoms
Off-treatment (e.g., 2 yrs, 5 yrs)

11. Cancer Survivorship
“Seasons of Survival”
 Acute phase
 Recovery phase
 Long-term survival
Disease-free
Cancer as a chronic disease
End-of-Life

12. Patient Perspective
The notion of living with, through, or
beyond cancer.
Susan Leigh
Survivorship Consultant
3-time cancer survivor

13. Cancer Survivorship
 1.5 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

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

16. Life Changes
“This is what I picture…this is really
weird, I see, like, a grave, and that’s
Miki, 21 the person that died, on August 4th.
Diagnosed She’s gone. Because you know, my
with life had to change, I had cancer and
leukemia at
age 18 I can’t go back there, I can’t go in
the past, so it’s like, she’s gone.”

17. Impact of Cancer

18. Stirred

19. Physical Emotional
Well-being Well-being
Not quantity but quality
Social Spiritual
Well-being Well-being

20. 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.”

21. Physical Well-Being
BODY CHANGES HEALTH AWARENESS
Energy not returned More concerned about my
health
My body cannot do what it
did before More aware of physical
problems and changes
Feel disfigured
Take better care of self
Wear clothing to cover up

22. Emotional Well-Being
POSITIVE FEELINGS NEGATIVE FEELINGS
Sense of pride Angry about having cancer
Learned something about Feel guilty for being
self responsible for getting
cancer
More confidence Made me feel old
Desire to give back to Feel guilty for not having
others been available to family

23. Emotional Well-Being
MEANING OF CANCER SOURCE OF WORRIES
The most difficult Worry about my health
experience of my life
Worry about cancer
I wonder why I got cancer coming back or getting
another cancer
Cancer is reason to make
life changes New symptoms make me
worry about cancer
Gave me direction in life coming back

24. Social Well-Being
RELATIONSHIPS LIFE INTERFERENCES
Higher value on Paying attention to health
relationships than interferes with my life
before
Having had cancer keeps
Feel special bond to me from activities I
people with cancer enjoy
Cancer-related symptoms
interfere with my life

25. Spiritual Well-Being
POSITIVE OUTLOOK NEGATIVE OUTLOOK
Realize time is precious Feel unsure about my
future
Strengthened religious
faith or sense of Worry about my future
spirituality
Afraid to die
Learned something about
life Feel like time in my life is
running out

26. Two Faces of the Cancer
Experience
Haase & Rostad, 1994

27. Movin’ On!

28. 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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29. 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 Leigh
3-time cancer survivor
Co-founder, National Coalition for Cancer Survivorship

30. Wei-ji
CRISIS =
Danger +
Opportunit

31. 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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32. STRENGTH
 Because 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

33. 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.
33

34. 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.
34

35. 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.
35

36. 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
36

37. An 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
37

38. 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.”

39. Young Adult Survivors Conference
(YASC)

40. Young Adult Survivors Conference (YASC)
Our Goals Their Goals
 Address survivorship  Have fun
issues  Meet other survivors
 Provide education and  Understand more
opportunity to tell about their cancer and
one’s story potential late effects
 Build bridges of  Learn about how to
support among young “tell my story so that it
adult cancer survivors will help others.”

41. Advocacy Training
Personal Advocacy
 Self-advocacy: Where it all begins
 You and Your Doctor
 Forget about Waldo: Where are those
Resources?

42. Advocacy Training
Mentor Advocacy: Advocating for
Others
 Becoming a Mentor
 Do’s & Don’t of Public Speaking
 Establishing and Maintaining Connections: A
Gateway to Community-Building

43. Advocacy Training
Community-National Advocacy
 Advocating at the State and National Level
 Getting Involved in Public Policy
 Networking within the Survivorship Community

44. 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.

45. Advocating for Oneself
 Advocacy 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

46. Advocating for Oneself
 Advocacy can improve your quality of life
 Advocacy for yourself may be the difference
that turns feeling hopeless and helpless into
feeling hopeful.

47. 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

48. Shaken-Stirred-Moved On
Kid Kancer Kookie
Dada