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Fear of Recurrence
Norma Lee MA, MD, LMFTFebruary 24, 2013
What we think, we become.
All that we are arises with our thoughts. With our thoughts, we make
the world.The Buddha
God, grant me the serenity to accept the
things I cannot change, the courage to change
the things I can, and the wisdom to know the
difference.Reinhold Neibuhr
Outline
•Fear of Recurrence•Psychiatric Considerations•Effects of Social Support•Effects of Coping Style•Cognitive Behavioral Therapy Techniques•Mindfulness Based Practices•Homework
Is Fear All Bad?
Beliefs/rules about the world either protect you from or make you more vulnerable to emotional distress
Too much fear means less problem solving ability
Some degree of FOR helps people to maintain medical follow up
Self-Regulation Model of Illness
•Every person has an illness representation based on somatic experiences/sensations•With an illness threat, cognitive and emotional processing systems tell the person how to act•If experiences/sensations are based on inaccurate information, the person’s illness representation may be false
Self-Regulation Model of Illness
May cause them to feel unnecessarily worried, anxious or fearful
If illness representation makes sense to person then they consider coping strategy to be appropriate
When looking at coping strategies, must consider person’s illness representation, previous experiences and world view
Fear of Recurrence
Quality of physician communication during initial diagnosis/initiation of treatment is a critical determinant of subsequent psychological well being
Not consistently related to time since diagnosis
Concerns and worries may persist long term
Fear of Recurrence
Younger women more concerned about: Potential disfigurement Loss of femininity, disability Feeling different or isolated Distress associated with treatment
Fear of Recurrence
Younger women’s concerns:Physical and mental quality of lifePerceived amount of impairmentChemotherapyHaving children
Psychiatric ImpactPrevalence of psychiatric disorders
22-47%4% of women with all stages of
breast cancer met criteria for PTSD41% had subsyndromal criteria
Intense fearHelplessnessHorror after being diagnosed
PTSDOther signs of PTSD
Intrusive thoughtsAvoidanceHyperarousal
PTSD symptoms correlated most significantly with:LymphedemaNumbness in hands, feet or chestOther physical problems
Depression & Anxiety
19% had depressionAlmost 100% had some level of anxietyDepression/anxiety levels affected by:
Being unaccompanied by spouse/partner to follow up visits
Not having someone to share problems with
Request to see a mental health providerUsing an alternative treatment
What Impacts Depression & Anxiety Levels?
SleepEmotional StatusFatigueBody AppearanceSense of HopelessnessUncertainty about the future
Why Depression is Harmful
Strong association between helplessness and hopelessness, depression and shortened survival
Depression makes the odds of not following a treatment plan three times higher
Conversely, social support and a cohesive family improve the odds of compliance with medical care
Why Depression is Harmful
Persistently depressed women may be at risk of not only poor QOL but also premature death
They should be promptly referred for a mental health assessment
Quick screen: Do you feel depressed?Do things seem hopeless to you?
When to Consider TherapyYour usual problem solving techniques
and coping skills aren’t workingYou feel stuckYou need someone who will just listenYou feel like you’re going crazyTALKING TO A THERAPIST DOES
NOT MEAN YOU ARE WEAK OR HAVE A CHARACTER FLAW!!
Considering Medication
You are having significant difficulty getting through the day Consistently crying a lotConsistently too anxious to do what needs to get done
Feeling suicidal
Therapy vs. Medication
Medication works fasterLonger term outcomes are best with
combination of medication and therapyTherapy teaches people skills they can
use foreverDistress may not be completely related
to cancer; therapy explores that
Social Support
Significant impact on quality of lifeWomen with high levels of support
had no meaningful impact on their QOL when they had cancer related intrusive thoughts
For women with low levels of support, the relationship between cancer related intrusive thoughts and QOL was significant and negative
Social SupportWomen with fewer sources of
support have more fear of recurrence
Feeling understood by loved ones help women to monitor their thoughts about recurrence
Proximity to a loved one has a regulatory effect on emotional functioning and helps to control emotional and physiological responses to stressors
Self-Efficacy
A person’s belief about his or her ability and capacity to accomplish a task or to deal with the challenges of life
Self-efficacy is a significant predictor of an active adjustment style and emotional well-being
Coping & Coping Styles
Coping styles are learned, usually from one’s family of origin
Related to illness representationPrior traumatic and/or current
stressful life event can adversely affect one’s ability to cope
Adaptive Coping
Active coping and problem-solving techniques result in better mood and adaptation
Flexibility in coping styles is crucialWomen who use available social
resources and support adapt better and may live longer than women who don’t
Adaptive Coping
Internal locus of controlProactive vs. reactive
Knowing what you can control (you) and what you cannot (everyone else)
Acceptance of responsibilityEscape-avoidance
Maladaptive Coping
Women who are passive or feel hopeless or pessimistic are rigid in their coping style; may become isolated and reject help when it is offered and adapt more poorly
Factors significantly associated with a high or moderate FOR include a depressive and a problem-oriented coping style (vs. an affective-oriented coping style)
Maladaptive Coping
Internal and external cues can contribute to fear of recurrenceSomaticFriends/family
Women who believe they are at risk of recurrence will be emotionally activated by neutral stimuli
What Can Be Done To Help?
Women who received an intervention designed to improve knowledge or coping or to reduce distress did better than those who didn’tLess anxiety/depression, increased sense of control, improved body image, better sexual function, greater satisfaction with care, improved medication adherence
Support Groups
Increasing evidence that participation in group activity offers a uniquely supportive and normalizing experience for many people
Group therapy has the ability to enrich QOL and help to prevent onset of depression
Added benefit with professional facilitator
Meaning Making Study
Routine care vs. four sessions that explored meaning of thoughts and feelings regarding one’s cancer experience within the context of past events and future goals
Significantly higher levels of self-esteem, optimism and self-efficacy in meaning making group
Cognitive-Behavioral Therapy (CBT)
Our thoughts (cognitions) influence how we feel (emotions) and how we act (behaviors)
It is not the cancer itself that produces the emotional response, but rather the meaning of the cancer to that person
Principles of CBT
We all have automatic thoughts that are based on experiences, not on reality
When people are anxious, two things occur:They overestimate that something bad will happen
They assume the worstThis is distorted thinking
How CBT WorksCognitive reframing: for thoughts to
be valid, they must be based in reality
Goal is to have people develop the ability to view a situation objectively
Is there another way to look at the situation?
What is the worst thing that could happen?
Could you handle it?
Principles of CBT
Relaxation techniques are a crucial part of cognitive-behavioral therapy
The ability to relax when starting to feel anxious makes people confident that they can cope with other stressful situations
The ability to relax allows for clearer thinking when problem solving
Principles of CBT
Exposure to feared situations is essential
Without exposure, people are able to continue with distorted thinking which only serves to increase behavioral and cognitive avoidance
Mind/Body Practices
Variety of techniques designed to enhance the mind’s capacity to influence bodily functions and symptoms. Examples:Relaxation, hypnosis, visual imagery, biofeedback
Therapies involving spirituality or expressive arts, such as visual art, music or dance
Mind/Body Practices
Visualization relaxation is a skill that can be learned; more practice leads to more effectively being able to relax
Massage: helpful in relieving pain, anxiety, fatigue and distress, as well as increasing relaxation
Mind/Body Practices
A mindfulness-based practice such as meditation may help alleviate cancer related cognitive impairment by engaging the person in an attention based mental activity
In cancer patients, mind/body therapies can reduce anxiety, depression and mood disturbances and assist their coping skills
Journaling
Very helpful for getting repetitive thoughts out of your head
No editing!Gratitude Journal: three things
you’re grateful for each dayShown to decrease distress and improve coping and functioning
Mindfulness Based Stress Reduction
Standardized form of meditation and yoga
Trains people to reduce their perceived level of stress by self-regulating arousal to stressful situations or symptoms
Has been shown to be effective in reducing anxiety, depression and stress in people with chronic pain
Mindfulness Based Stress Reduction
Mindfulness: learning to be present in life as it is occurring, applying attitudes of kindness, patience, curiosity, acceptance, letting go and non-judging
Begin to realize the amount of emotional energy spent regretting the past or worrying about the future has resulted in missing the present moment
Intervention
Six week modified programLearned meditations, body scan,
visualizationLearned understanding of their
reaction to pleasant and unpleasant events
Had to practice daily
MSBR Study
Significantly reduced symptoms of anxiety, depression, fear of recurrence
Improved indicators of physical and emotional quality of lifeEnergy, sleep, pain, social functioning
FOR remained prominent over time with 70% of women having fear after five years
Effects of Stress
Stress related psychosocial factors are associated with: A higher cancer incidence in initially healthy people
Poorer survival in people diagnosed with cancer
Higher cancer mortality
The Best Study Ever
39 hours of sessions with a psychologist over one year vs. regular care
Goals: reduce distress, improve QOL, improve health behaviors (diet, exercise, smoking cessation), facilitate cancer treatment compliance and facilitate medical follow up
Interventions
PMR for stress reductionProblem solving for common issues,
e.g., fatigueIdentifying supportive family/friends
capable of providing assistanceUsing assertive communication to get
one’s psychological and medical needs met
Areas Addressed
Strategies to increase daily activity (walking, exercise)
Improving dietary habits (decreasing fats)
Finding ways to cope with treatment side effects e.g., nausea
Skills for maintaining adherence to medical treatment and follow up
Results
Intervention group had:Significantly lower risk of breast cancer recurrence
Significantly lower risk of breast cancer death
Significantly lower risk of all-cause mortality
Results
If cancer recurred, it was six months later than the control group
If someone died, it was over a year later than in the control group
Which Patients Did Best?
Patients with greatest reduction in distress and physical symptoms:Practiced daily PMRUnderstood and remembered daily that continued stress could adversely affect their health and that it could be controlled/reduced by using the intervention techniques
Other Interesting Results
Immune changes secondary to stress hormones may promote cancer growth or metastasis
As patients reported significant declines in their emotional distress and were found to have reduced symptoms and treatment related toxicities, their immune function was stabilized or improving
Other Interesting Results
In the 17 months before detection, patients who had a recurrence were found to have worsening immune function compared to disease free patients
Those patients also had higher cortisol levels and worse physical functioning, fatigue and QOL during that period
Exercise & Stress Reduction
Evidence for regular exercise is most compelling for breast cancer survivors
Physical activity can improve mood, decrease depression and anxiety, improve body image and self esteem, reduce nausea and fatigue, enhance cardiovascular functioning, control weight, and potentially alter immune function
Key Elements for Optimal Outcomes
Access to state of the art cancer careActive coping/active engagement in one’s
carePerceived availability and if needed, use of
social supportHaving a sense of meaning or purpose in life
Can include someone to live for, spiritual belief or connectedness, a way to make sense of illness/ health, one’s place in the world
HomeworkPut your own oxygen mask on firstTake time for yourself every dayStop judging yourself and comparing
yourself to others; life isn’t a contestTreat yourself as you would a friendDefinition of insanity: doing the
same thing over and over again and expecting different results
Women are like teabags. We don’t know our true strength until we are in hot water.
Eleanor Roosevelt