Managing Fear of Recurrence and Fear of Cancer Progression Bay Area Cancer Connections, November 4, 2016 Manuela M. Kogon, M.D.
Statistics About 1 in 8 U.S. women (about 12%) will develop invasive breast cancer over the course of her lifetime 2016, an estimated 246,660 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 61,000 new cases of non-invasive (in situ) breast cancer http://www.cancer.org/cancer/breastcancer/detailedguide/breastcancer-key-statistics
Fear of Recurrence Fear of Progression I don t have cancer I do have cancer I am afraid it will come back I am afraid it might still be there I am afraid it will grow bigger
Campbell, H. S., Sanson-Fisher, R., Turner, D., Hayward, L., Wang, X. S., & Taylor-Brown, J. (2010). Psychometric properties of cancer survivors' unmet needs survey. Support Care Cancer, 19(2), 221-230
Cancer (n=51,381) Healthy (n=217,630) Depression 11.6% 10.2% Cancer (n=48,964) Anxiety 17.9% 13.9 Healthy (n=226,467) Mitchell, A. J., Ferguson, D. W., Gill, J., Paul, J., & Symonds, P. (2013). Depression and anxiety in longterm cancer survivors compared with spouses and healthy controls: a systematic review and metaanalysis. Lancet Oncol, 14(8), 721-732.
Definitions Anxiety: a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome. Anxiety: a nervous disorder characterized by a state of excessive uneasiness and apprehension, typically with compulsive behavior or panic attacks.
Physiology of stress
Autonomic Nervous System Uncomfortable Fight Flight Freeze Comfortable Rest Digest Play Sympathetic (DI)STRESS Parasympathetic
Cancer is not a mental health disorder issue It is a distress issue
Distress in the Context of Cancer The National Comprehensive Cancer Network (NCCN) Distress Management Panel has defined distress as a multi-determined unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, spiritual crisis.
Screen for distress 40% Advantage: physical, emotional, practical, family, spiritual (not just mood) Disadvantage: low positive predicative value Carlson, L. E., Waller, A., & Mitchell, A. J. (2012). Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol, 30(11), 1160-1177.
Fear of Recurrence Fear of Progression I don t have cancer I do have cancer I am afraid it will come back I am afraid it might still be there I am afraid it will grow bigger
THOUGHTS The cancer will come back The cancer will kill me I need to rest I can t get out of bed I cannot loose my job Who is supporting me? The cancer will progress EMOTIONS Sad Angry Disgusted Happy Fearful Surprised Palpitations Queasy Chest tightness Headache Malaise BODY Exhausted Fatigued Energetic Foggy Muscle tension
THOUGHTS EMOTIONS BODY......
THOUGHTS I DON T KNOW EMOTIONS Sad Angry Disgusted Happy Fearful Surprised Palpitations Queasy Chest tightness Headache Malaise BODY Exhausted Fatigued Energetic Foggy Muscle tension
Uncertainty It will happen It will not happen REALITY It could happen
Human kind cannot bear very much reality T.S. Elliot
THOUGHTS The I cancer DON T will come back The cancer will kill me I need to rest CERTAINTY I can t KNOW get out of bed I cannot loose my job Who is supporting me? PREDICTABILITY The cancer will progress NEEDS EMOTIONS Sad Angry Disgusted Happy Fearful Surprised Palpitations Queasy Chest tightness Headache Malaise BODY Exhausted Fatigued Energetic Foggy Muscle tension
Normalcy Acceptance Predictability Control Order Accountability Fairness Independence Health.... Certainty Perfection Recognition Love Intimacy Closeness Autonomy Immediacy Appearance....
Response to external stimulus THOUGHTS EVENT EMOTIONS BODY
Stress response Stimulation of stress response is not just about the external reality but the meaning that you attach to it
External Event and Internal Experience
Stress and Health
Response to external stimulus EVENT THOUGHTS EMOTIONS BODY
THOUGHTS I wonder if this is related to cancer? Why do I have a headache? I am sure this is related to cancer EMOTIONS Worry Fear FEAR BODY Hip pain Skin bump Insomnia Headache
It is a man's own mind, not his enemy or foe, that lures him to evil ways Gautama Buddha
Definitions Thought: An idea or opinion produced by thinking or occurring suddenly in the mind Emotion: A mental state that arises spontaneously rather than through conscious effort and is often accompanied by physiological changes
I should not feel angry or sad, I should feel grateful I should not think negative thoughts, they will make my cancer come back Not many people can reason themselves out of emotion or thought Most people can learn to alter emotion, body and thought
Body Mind Connection Thoughts When is the next shoe going to drop? I know I am going to die This is never going to end Who will raise my children? The cancer will come back I am not attractive anymore The cancer will grow bigger Emotions Fear Fear Anger, fear Sadness Fear, anger Disappointment Fear, anger
Human kind cannot bear very much reality T.S. Elliot People do anything to alleviate their anxiety Dr. Rosen to Don, Mad Men Season 6 Ep 1 1:29:06
Importance Emotion
Body Mind Connection Thoughts/Emotion When is the next shoe going to drop? I know I am going to die Actions Getting a scan every month Not buying any new clothes This is never going to end Who will raise my children? The cancer will come back I am not attractive anymore Spending your 401K Distancing from partner
Stress and Health
Response to external stimulus THOUGHTS EVENT EMOTIONS BODY
Fear of Recurrence Fear of Progression I don t have cancer I do have cancer I am afraid it will come back I am afraid it might still be there I am afraid it will grow bigger
THOUGHTS EMOTIONS BODY......