Centers for Disease Control and Prevention (CDC). Cancer survivors–United States, 2007. MMWR Morb Mortal Wkly Rep. 2011; 60:269-272.
1 in 25 Americans are cancer survivors
I would argue that the time when treatment ends is just the beginning; the beginning of processing one’s experience and starting to heal physically, emotionally and spiritually.
CA Cancer J Clin, online 4/26/12 Cancer and its treatment can make you feel that you have no or little control over your life. Being an advocate for yourself can help you regain some of that lost control, build confidence that you can face challenges that seem overwhelming, connect with others, improve the quality of your life, and potentially make a difference in the lives of other cancer patients in your community and beyond. In short, rather than sinking into a helpless and hopeless hollow, self-advocacy can help you climb to a more hopeful and active perch.
FACES (David Spiegel at Stanford) to Cope with Cancer Do not be an ostrich. 2) Change the anxiety into fear and the depression into sadness. Then work to reduce that. The amount of pain we experience can be worsened or lessened by our reaction to and experience of it. For example, if you have pain and imagine that part of your body enveloped in warm water or ice (whatever you prefer), it actually changes the way your brain experiences the pain. You are more powerful than you think! 3) Focus on specific stressors. For example, if you are awaiting test results and are a nervous wreck, think about the possible outcomes and have a plan. Think in more or less terms – not all or nothing. Close your eyes, focus on the problem, breath, let your mind open to the possible responses. Feel your way to a new approach. 4) There is nothing wrong with feeling angry/sad some of the time. Data show the more you express your feelings, the less depressed you are. 5)
Indeed regulatory agencies and professional organizations are now driving survivorship program development. The Joint Commission, American College of Surgeons, and American Society of Clinical Oncologists.
Living Well with Cancer
Living Well With Cancer Cobie Whitten, PhD Providence Regional Cancer System Gregg VandeKieft, MD, MA Providence St. Peter Hospital
Life isn’t about waiting for the storm to pass . . . It’s about learning to dance in the rain.
Cancer Survivorship: Changing Times• Needs beyond surgery, chemo, radiation• Cancer now a curable disease for some and a chronic illness for others• Patients with terminal disease are also “survivors”• Maintaining a sense of well being and enhancing quality of life is paramount
Who is a Cancer Survivor?Anyone who has been diagnosed with cancer from the time of cancer diagnosis, through the balance of his or her life. Includes those dying from untreatable cancer. Includes family members, friends, and caregivers. Centers for Disease Control and Prevention (CDC)
Estimated Number of Cancer Survivors in the United States from 1971-2008
Why is the number of people alive after diagnosis increasing?• Earlier diagnosis through screening• Aging population• More effective treatment• Prevention of secondary disease and disease recurrence• Decreases in mortality from other causes
End of Active Treatment: Unexpected Stress• Feeling of abandonment• Continued symptoms (e.g., pain, fatigue, anxiety)• Active treatment over fear of cancer resurgence• Confusion about which providers to see for follow-up care
LIVESTRONG Essential Elements of Survivorship Care (Sep 2011)Goal: Build consensus on what any effective survivorship program must provide• “Must Have” elements include: – Care plan and treatment summary – Screening for new cancers & surveillance recurrence – Care coordination – Health promotion education – SYMPTOM MANAGEMENT & PALLIATIVE CARE
What are Barriers to Wellness in Chronic Illness?• Current medical model focuses on disease rather than illness – Disease: a medical condition – Illness: the patient’s experience• Curing vs. Healing – Hope as a verb• Clarity of Communication – Confusing terms – Hesitance to speak or hear difficult news
Creating A Patient-Provider Partnership Traditional PartnershipNature of Relationship • Professional in charge • Professional expert in • Patient passive disease • Patient expert in their lifeResponsibility, Goals • Professional dictates Shared decision making: treatment plan • Patient sets goals • Patient “complies” • Professional presents treatment options to help achieve those goalsProblem Solving • Patients presents with • Problems identified “complaint” together based on goals • Professional identifies • Maximize “self-help” and solves problem skills Bodenheimer, et al, JAMA. 2002
Wellness Model: Core Elements• Starts at time of diagnosis• Continuous assessment of QOL and goals• Suggests appropriate interventions for – Symptoms – Treatment – Wellness• Promotes wellness in the face of illness• Provides a survivorship plan
Questions to Consider• What is your understanding of your condition?• What do you expect will happen from here?• When you think about the future, what are you hoping for?• Does anyone else know how you feel?