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

3. 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

4. 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

5. Outline Fear of Recurrence Psychiatric Considerations
Effects of Social Support
Effects of Coping Style
Cognitive Behavioral Therapy Techniques
Mindfulness Based Practices
Homework

6. 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

7. 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

8. 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

9. 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

10. Fear of Recurrence Younger women more concerned about:
Potential disfigurement
Loss of femininity, disability
Feeling different or isolated
Distress associated with treatment

11. Fear of Recurrence Younger women’s concerns:
Physical and mental quality of life
Perceived amount of impairment
Chemotherapy
Having children

13. 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

14. 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

15. 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

16. What Impacts Depression & Anxiety Levels?
Sleep
Emotional Status
Fatigue
Body Appearance
Sense of Hopelessness
Uncertainty about the future

17. 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

18. 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?

19. 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!!

20. 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

21. 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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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)

30. 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

32. 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

33. 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

34. 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

35. 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

36. 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

37. 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?

38. 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

39. 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

41. 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

42. 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

43. 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

44. 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

45. 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

46. 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

47. Intervention Six week modified program
Learned meditations, body scan, visualization
Learned understanding of their reaction to pleasant and unpleasant events
Had to practice daily

48. 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

49. 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

50. 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

51. 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

52. 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

53. 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

54. 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

55. 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

56. 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

57. 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

58. 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

59. 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

60. 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

61. Women are like teabags. We don’t know our true strength until we are in hot water. Eleanor Roosevelt