fear of recurrence for breast and ovarian cancer survivors
TRANSCRIPT
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Fear of Recurrence for Breast and Ovarian Cancer
SurvivorsA “Fear Management” (FM) Toolbox
Wendy G. Lichtenthal, PhDAssistant Attending Psychologist, Department of Psychiatry & Behavioral Sciences
Memorial Sloan Kettering Cancer Center
SHAREOctober 6, 2016
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Why are you here today?
Because This. Is. Hard.
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Overview
• What we know about fear of recurrence
• Our group’s efforts to reduce fear of recurrence
• What you can do for “fear management” (FM)
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Fear of Cancer Recurrence:Survivors’ Most Common Concern
• Rates range from 26% to as high as 99%, depending on measure used and group being examined
• Fear commonly persists: even 5 years post-diagnosis, 70% -82% of cancer survivors may still experience fear of recurrenceAmerican Cancer Society, 2007; Baker et al., 2005; Cappiello et al., 2007; Hewitt et al., 2006; Hodgkinson et
al., 2007; Johnson Vickberg, 2001; Koch et al., 2014; Mast, 1998; Mishel et al., 2005; Simard et al., 2013; Tewari &
Chagpar, 2014
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What do cancer survivors fear? It varies from one person to another.
• Chemotherapy• Surgery• Radiation• Hospitalization• Physical changes• Loss of hair • Emotional distress• Pain• Advanced disease• Suffering of loved ones• Death
Johnson Vickberg, 2001
Chemotherapy...worrying about my family…
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Higher levels of fear of recurrence
can be impairing• Associated with depression and
reduced quality of life
• Associated with increased body monitoring, medical visit anxiety, and general preoccupation with health
Alfano & Rowland, 2006; Dandenau et al., 2007; Eismann et al., 2010; Hodgkinson et al., 2007; Koch et al., 2014; McEwen, 1998 ; Tewari & Chagpar, 2014; van den Beuken-van
Everdingen et al., 2008
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And fear of recurrence is challenging to manage….
even for professionals.
• Beliefs are not irrational
• In a survey of 64 psychosocial professionals, over 90% found managing fear of recurrence at least somewhat challenging
• Over 99% were interested in further training in how to manage fear of recurrence
Butow et al., 2013; Thewes et al., 2014
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Despite this, few psychosocial interventions have been designed to specifically target fear of recurrence
Butow et al., 2013; Humphris & Ozackinci , 2008; Mishel et al., 2005; Thewes et al., 2014
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In fact, management of fear of recurrence is the
number one unmet need of cancer survivors
American Cancer Society, 2007; Baker et al., 2005; Hewitt et al., 2006; Hodgkinson et al., 2007; Johnson Vickberg, 2001; Mishel et al., 2005; van den Beuken-van Everdingen et al., 2008
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Thus, there has been a compelling need
to develop interventions that directly target fear of cancer
recurrence
Johnson Vickberg, 2001; Mishel et al., 2005; van den Beuken-van Everdingen et al., 2008
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A Promising Target: Cognitive Biases• Being attentive toward threat is often normative and
adaptive
• Higher levels of anxiety may be maintained by cognitive biases, e.g., attention and interpretation biases
• Vicious cycle: biases result in anxiety, and in turn, anxiety results in more biased information processing
• Difficult to modify threat biases in survivors through talk therapyBar-Haim et al., 2007; Butow et al., 2014; Glinder et al., 2007; Hewitt et al., 2006; Macleod et al., 1986;
Kaur et al., 2013; Miles et al., 2009; Ouimet et al., 2009; Owens et al., 2004; van den Beuken-van Everdingen et al., 2008
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Cognitive Bias Modification (CBM)• Novel, brief, computerized intervention approach
• Rapid and repetitive computer tasks facilitate new automatic cognitive habits outside of one’s conscious awareness better than verbal methods
• Can be administered in users’ homes, is cost-effective, easily disseminated, does not have the side effects of medication, does not require a trained therapist, and takes relatively little time
• Can be personalized with a person’s strongest fears
• Has promise for cancer survivorsAmir et al., 2009; Beard et al., 2012; Hallion & Ruscio, 2011; Mogoase et al., 2014
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g (T2 v. Control) * p ** g (T3 v.
Control) * p**
Experimental 0.35 .095 0.54 .005* Hedges’ g effect sizes are standardized such that positive values represent improvement.** Wald χ2 is derived from generalized estimating equations estimating the association between the group x time interaction and the outcome of interest (i.e., differences in change over time between the treatment groups and the control group).Sample sizes: Baseline: n=97 (Experimental: n=64 / Control: n=33)
Post-Intervention: n=78 (Experimental: n=50 / Control: n=28)Follow-Up: n=75 (Experimental: n=49 / Control: n=26)
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Conclusions from Study• Both versions of AIM-FBCR appear to improve
health worries as compared to a placebo control condition; though the clinical significance of these findings is unknown
• Limited by small, homogeneous sample; challenges with computer program; and completion of sessions at home, meaning less control of testing conditions
• Plan is to create an “app” to improve ease of use and adapt for other cancer survivor populations
Notebaert et al., 2014; Simard et al., 2013
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So what can you do NOW for Fear Management (FM)?
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Trials examining interventions for fear of recurrence
• Conquer Fear (Butow et al., 2013): Ongoing RCT comparing 5-session individual intervention that uses blend of Meta-Cognitive Therapy and Acceptance and Commitment Therapy to relaxation
• Worry Less and Live Well after Cancer Treatment (WiLLoW) (Dunn, Shumay, et al., unpublished): RCT comparing 7-session Acceptance and Commitment Therapy group to treatment as usual
• Beyond Fear [part of Survivors’ Worries of Recurrent Disease (SWORD)] (van der Wal et al., 2015): RCT comparing 5 face-to-face and 3 online/telephone sessions of CBT to treatment as usual
• Mindfulness-based Stress Reduction (Lengacher et al., 2014): RCT comparing 6 sessions of MBSR to treatment as usual
• Gratitude Letters (Otto et al., 2016): RCT comparing 6 letter writing sessions to an online writing control condition
Butow et al., 2013; Humphris & Ozackinci , 2008; Mishel et al., 2005; Otto et al., 2016; Thewes et al., 2014
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Create your own FM toolbox• Normalize and validate• Share and process• Make sense of your responses• Establish effective ways to
communicate with your healthcare team
• Use cognitive-behavioral techniques• Use mindfulness strategies• Redirect your attention• Find meaning in your life• Maintain COMPASSION
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Normalize and Validate
• Give yourself permission to feel
• Use self-talk
• Check in with a friend, trusted family member, or other survivors
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Don’t underestimate the power of sharing
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Process your feelings and make sense of your responses
• Understand the context: we all bring our own
– Personal cognitive schemas and worldviews
– Past or ongoing life experiences and relationships
• Express emotions in helpful ways
• Discuss with others who are supportive
• Journal
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Be compassionate toward the lens through which you view the world
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Establish effective ways to communicate with your
healthcare team• What information do you need to know? (e.g.,
level of risk, when to contact team about symptoms, etc.)
• What is your provider’s recommendation about surveillance?
• When should you expect results after undergoing tests and scans?
• What is the best way to reach the office when you have concerns?
• What strategies do you think will get your needs met?
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Cognitive-Behavioral Strategies
van de Wal et al., 2015
My cancer is going to recur.
ScaredAvoidance, checking, reassurance-seeking
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Consider your beliefs about your anxietySelf-Regulation of Executive Function (S-REF)
Butow et al.., 2013; Butow et al., 2014
Fear of Cancer
Recurrence
Self-beliefs“I can’t handle this
anxiety.”
Meta-cognitions: Beliefs about the benefit and
danger/ uncontrollability of worry
“Worrying about cancer will help me be prepared for it.”“Worrying like this is going
to make me sick.”Existential concerns
“I don’t know what I should be focusing on in my life right now.”
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Cognitive responses: Address distress with helpful
thoughts• Reframe thoughts related to both the
benefits and dangers of worrying
• Come up with helpful responses
• Minimize critical self-evaluation
• Be compassionate toward your thoughts – understand but gently eliminate the “should's”
• Ask yourself what kind words you would share with a friend or loved one in this situation
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Change the meaning of the surges of anxiety
• Temporary
• Manageable
• Natural
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Behavioral responses:Address distress with helpful behaviors
• Minimize avoidance where possible (including allowing thoughts as they emerge)
• Choose helpful behaviors with healthcare providers:
– What is my goal in this situation?
– What actions or communication approaches are most likely going to help me achieve this goal?
• Engage in pleasurable activities (keep a list to turn to!)
• Engage in relaxation practices (deep and calming breathing; progressive muscle relaxation)
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Mindfulness Strategies• Moment-to-moment, non-judgmental
awareness: NOTICING
• Pay attention to the present moment (including thoughts and feelings) as non-reactively and openheartedly as possible
• Practice by concentrating on something, like your breath, using focused attention and your senses: notice its pace, sound, feel, temperature
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Focus. Wander. Start over.
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Leading with the mind:Using focused attention
• Mindfulness meditation websites
– http://www.mindful.org/meditation/mindfulness-getting-started/
– http://www.buddhanet.net/audio-meditation.htm
– http://marc.ucla.edu/body.cfm?id=22
• Guided imagery
• Apps like Breathe2Relax, Headspace, Buddify, Calm, Take a Break
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Acceptance• Maintain compassion
toward one’s thoughts
• Allow them to “be”…try not to push them out
• Redirect your attention to the here and now
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Walking the fine line between…
Accepting Your Feelings
while
Redirecting Attention
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Takes practice to work that “flexibility” muscle!
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Leading with the body:Use your body to discharge and
to bring you back to the here and now
• Progressive muscle relaxation
• Massage
• Acupuncture
• Exercise
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Find meaning in your life• Write letters of gratitude to people in your life (Otto et al.,
2016)
• Make go-to lists to review during “moments”: – What are the activities and experiences that are most important
to you? What can you engage in when anxiety surges?– What are the values you hold most dear? – Who do you want to be in the face of the challenge of fear of
recurrence?
• Find meaning in how you face challenging situations and the attitude you choose:
The attitude you choose is what you always have control of
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“Belief in a conditional world opens up the consideration of multiple possibilities since certainty is not absolute." Mishel, 1990 (p. 261)
Mishel, 1990
For cancer survivors…
“If everything’s okay next year, then…”
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“Conditional” living can leave you feeling stuck….
“Figure Stuck between Two Walls” by William T. Ayton, 2009
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So, how does one get “unstuck”?
Image courtesy of suphakit73 at FreeDigitalPhotos.net
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First, validate rather than criticize your feelings: this experience is HARD!
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Then…
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Consider the choice you have in how you create meaning.
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“…everything can be taken from a man but one thing: the last of the human freedoms— to choose one’s attitude in any given set of circumstances…”
Frankl, 1959/1984
Viktor E. Frankl, M.D., 1905-1997
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RESPONSIBILITY
Breitbart & Applebaum, 2011; Breitbart & Poppito, 2010; Frankl, 1959/1984
The ability to respond to the life you have been given.
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COURAGE
Breitbart & Applebaum, 2011; Breitbart & Poppito, 2010; Frankl, 1959/1984
Moving ahead in spite of uncertainty.
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He who has a why to live for can bear almost any how.
- Friedrich Nietzsche
Frankl, 1959/1984
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What are YOUR whys?
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Fear Management (FM):Cultivating compassion toward yourself
• Understand your personal context and lens
• Be mindful of and compassionate toward your emotional responses
• Develop a compassionate mantra or helpful response (“Of course I’m scared” or “Back to the moment” or simply, “Compassion”)
• Practice staying in the moment, allowing feelings and thoughts to naturally rise and fall, coming back to the moment, and living life meaningfully
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The antidote to worrying about the future is
remaining in the present.
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Questions? Thoughts? Concerns?
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Thank you for your time and attention!