1.
Fear of Recurrence for
Breast and Ovarian Cancer Survivors
A “Fear Management” (FM)Toolbox
Wendy G. Lichtenthal, PhD
AssistantAttending Psychologist, Department of Psychiatry & Behavioral Sciences
Memorial Sloan KetteringCancer Center
SHARE
October 6, 2016

2.
Why are you here today?
Because
This. Is. Hard.

3.
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)

4.
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 recurrence
American Cancer Society, 2007; Baker et al., 2005; Cappiello et al., 2007; Hewitt et al., 2006; Hodgkinson et al., 2007;
JohnsonVickberg, 2001; Koch et al., 2014; Mast, 1998; Mishel et al., 2005; Simard et al., 2013; Tewari & Chagpar, 2014

5.
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
JohnsonVickberg, 2001
Chemotherapy...
worrying about
my family…

6.
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

7.
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

8.
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

9.
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;
JohnsonVickberg, 2001; Mishel et al., 2005; van den Beuken-van Everdingen et al., 2008

10.
Thus, there has been a compelling need
to develop interventions that
directly target fear of cancer recurrence
JohnsonVickberg, 2001; Mishel et al., 2005; van den Beuken-van Everdingen et al., 2008

11.
A PromisingTarget: 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
therapy
Bar-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

12.
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 survivors
Amir et al., 2009; Beard et al., 2012; Hallion & Ruscio, 2011; Mogoase et al., 2014

13.
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)

14.
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

15.
So what can you do NOW
for Fear Management (FM)?

16.
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 CancerTreatment (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

17.
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

18.
Normalize andValidate
• Give yourself permission to feel
• Use self-talk
• Check in with a friend, trusted family member, or other survivors

19.
Don’t underestimate
the power of sharing

20.
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

21.
Be compassionate toward the lens
through which you view the world

22.
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?

23.
Cognitive-Behavioral Strategies
van de Wal et al., 2015
My cancer is going to recur.
Scared
Avoidance,
checking,
reassurance-
seeking

24.
Consider your beliefs about your anxiety
Self-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.”

25.
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

26.
Change the meaning of the surges of anxiety
• Temporary
• Manageable
• Natural

27.
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)

28.
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

29.
Focus. Wander. Start over.

30.
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

31.
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

32.
Walking the fine line between…
AcceptingYour Feelings
while
Redirecting Attention

33.
Takes practice to work that “flexibility” muscle!

34.
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

35.
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

36.
“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…”

37.
“Conditional” living can leave
you feeling stuck….
“Figure Stuck betweenTwoWalls”
byWilliamT. Ayton, 2009

38.
So, how does one get “unstuck”?
Image courtesy of suphakit73 at FreeDigitalPhotos.net

39.
First, validate rather than criticize your
feelings: this experience is HARD!

40.
Then…

41.
Consider the choice you have in how
you create meaning.

42.
“…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

43.
RESPONSIBILITY
Breitbart & Applebaum, 2011; Breitbart & Poppito, 2010; Frankl, 1959/1984
The ability to respond to the
life you have been given.

44.
COURAGE
Breitbart & Applebaum, 2011; Breitbart & Poppito, 2010; Frankl, 1959/1984
Moving ahead in spite of uncertainty.

45.
He who has a why to live for
can bear almost any how.
- Friedrich Nietzsche
Frankl, 1959/1984

46.
What areYOUR whys?

47.
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

48.
The antidote to worrying about the
future is remaining in the present.

49.
Questions? Thoughts? Concerns?

50.
Thank you for your time and attention!