Medical Perspective Focus on survival Reduce symptoms Prevent long-term effects Manage symptoms Off-treatment (e.g., 2 yrs, 5 yrs)
Cancer Survivorship“Seasons of Survival” Acute phase Recovery phase Long-term survival Disease-free Cancer as a chronic disease End-of-Life
Patient Perspective The notion of living with, through, or beyond cancer. Susan Leigh Survivorship Consultant 3-time cancer survivor
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
While these statistics indicateincreased length of survival forindividuals diagnosed with cancer, theygive no indication of the quality of life.
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 andleukemia at age 18 I can’t go back there, I can’t go in the past, so it’s like, she’s gone.”
Physical EmotionalWell-being Well-being Not quantity but quality Social SpiritualWell-being 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 AWARENESSEnergy not returned More concerned about my healthMy body cannot do what it did before More aware of physical problems and changesFeel disfigured Take better care of selfWear clothing to cover up
Emotional Well-BeingPOSITIVE FEELINGS NEGATIVE FEELINGSSense of pride Angry about having cancerLearned something about Feel guilty for being self responsible for getting cancerMore confidence Made me feel oldDesire to give back to Feel guilty for not having others been available to family
Emotional Well-BeingMEANING OF CANCER SOURCE OF WORRIESThe most difficult Worry about my health experience of my life Worry about cancerI wonder why I got cancer coming back or getting another cancerCancer is reason to make life changes New symptoms make me worry about cancerGave me direction in life coming back
Social Well-BeingRELATIONSHIPS LIFE INTERFERENCESHigher value on Paying attention to health relationships than interferes with my life before Having had cancer keepsFeel special bond to me from activities I people with cancer enjoy Cancer-related symptoms interfere with my life
Spiritual Well-BeingPOSITIVE OUTLOOK NEGATIVE OUTLOOKRealize time is precious Feel unsure about my futureStrengthened religious faith or sense of Worry about my future spirituality Afraid to dieLearned something about life Feel like time in my life is running out
Two Faces of the CancerExperienceHaase & Rostad, 1994
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.” 28
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
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 31
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
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
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
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
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
An active quest or journey to make sense of amystery/challengeDeveloping a story that makes sense (positivemeaning) of the cancer experienceFitting “my/our cancer story” into a larger lifestorySharing (and testing and revising) my/our storywith supportive communities offamily, friends, other survivors, publics 37
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)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.”
Advocacy Training Personal Advocacy Self-advocacy: Where it all begins You and Your Doctor Forget about Waldo: Where are those Resources?
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
Advocacy Training Community-National Advocacy Advocating at the State and National Level Getting Involved in Public Policy Networking 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 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
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.
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 Kid Kancer Kookie Dada