Fear of Recurrence Norma Lee MA, MD, LMFT February 24, 2013

What we think, we become. All that we are arises with our thoughts 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 life Perceived amount of impairment Chemotherapy Having children

Psychiatric Impact Prevalence of psychiatric disorders 22-47% 4% of women with all stages of breast cancer met criteria for PTSD 41% had subsyndromal criteria Intense fear Helplessness Horror after being diagnosed

PTSD Other signs of PTSD Intrusive thoughts Avoidance Hyperarousal PTSD symptoms correlated most significantly with: Lymphedema Numbness in hands, feet or chest Other physical problems

Depression & Anxiety 19% had depression Almost 100% had some level of anxiety Depression/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 provider Using an alternative treatment

What Impacts Depression & Anxiety Levels? Sleep Emotional Status Fatigue Body Appearance Sense of Hopelessness Uncertainty 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 Therapy Your usual problem solving techniques and coping skills aren’t working You feel stuck You need someone who will just listen You feel like you’re going crazy TALKING 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 lot Consistently too anxious to do what needs to get done Feeling suicidal

Therapy vs. Medication Medication works faster Longer term outcomes are best with combination of medication and therapy Therapy teaches people skills they can use forever Distress may not be completely related to cancer; therapy explores that

Social Support Significant impact on quality of life Women 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 Support Women 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 representation Prior 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 crucial Women who use available social resources and support adapt better and may live longer than women who don’t

Adaptive Coping Internal locus of control Proactive vs. reactive Knowing what you can control (you) and what you cannot (everyone else) Acceptance of responsibility Escape-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 recurrence Somatic Friends/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’t Less 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 worst This is distorted thinking

How CBT Works Cognitive 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 day Shown 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 program Learned meditations, body scan, visualization Learned 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 life Energy, 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 reduction Problem solving for common issues, e.g., fatigue Identifying supportive family/friends capable of providing assistance Using 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 PMR Understood 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 care Active coping/active engagement in one’s care Perceived availability and if needed, use of social support Having 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

Homework Put your own oxygen mask on first Take time for yourself every day Stop judging yourself and comparing yourself to others; life isn’t a contest Treat yourself as you would a friend Definition 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