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 RecurrenceYounger women more concerned

about: Potential disfigurement Loss of femininity, disability Feeling different or isolated Distress associated with treatment

Fear of RecurrenceYounger 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 & Anxiety19% 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 HarmfulStrong 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 HarmfulPersistently 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 MedicationYou 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. MedicationMedication 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 SupportSignificant 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 CopingActive 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 CopingInternal locus of control

Proactive vs. reactiveKnowing what you can control (you)

and what you cannot (everyone else)Acceptance of responsibilityEscape-avoidance

Maladaptive CopingWomen 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 GroupsIncreasing 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 StudyRoutine 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 CBTWe all have automatic thoughts that are

based on experiences, not on realityWhen 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 CBTRelaxation techniques are a crucial

part of cognitive-behavioral therapyThe 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 PracticesVariety 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 PracticesVisualization 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 PracticesA 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

JournalingVery helpful for getting repetitive

thoughts out of your headNo 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

InterventionSix week modified programLearned meditations, body scan,

visualizationLearned understanding of their

reaction to pleasant and unpleasant events

Had to practice daily

MSBR StudySignificantly reduced symptoms of

anxiety, depression, fear of recurrenceImproved 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 StressStress 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 Ever39 hours of sessions with a psychologist

over one year vs. regular careGoals: reduce distress, improve QOL,

improve health behaviors (diet, exercise, smoking cessation), facilitate cancer treatment compliance and facilitate medical follow up

InterventionsPMR 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 AddressedStrategies to increase daily activity

(walking, exercise)Improving dietary habits (decreasing

fats)Finding ways to cope with treatment

side effects e.g., nauseaSkills for maintaining adherence to

medical treatment and follow up

ResultsIntervention 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 ResultsImmune 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 ResultsIn 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 ReductionEvidence for regular exercise is most

compelling for breast cancer survivorsPhysical 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