1. Wendy G. Lichtenthal, PhD Department of Psychiatry & Behavioral Sciences Memorial Sloan-Kettering Cancer Center Living Beyond Breast Cancer October 22, 2012 Living with Metastatic Breast Cancer: Emotional Impact

2. Overview The feelings of uncertainty you may have while living with metastatic breast cancer Effective approaches for managing emotions Coping methods for every day and during stressful times Finding meaning and living fully beyond your fears

3. Living with uncertainty Loss of innocence: losing the luxury of “normal defenses” Scanxiety and feeling like “Russian roulette” Sadness, depression, grief, and isolation Treatment stops and starts: an emotional roller coaster

4. “Threat” and the fine line between anger and fear…

5. Coping Methods for Managing Your Emotions

6. Create your own toolbox Maintain COMPASSION Normalize Validate Share and process Make sense of your responses Use cognitive-behavioral techniques Use mindfulness strategies Redirect your attention Find meaning in your lives

8. Normalize and validate Give yourself permission to feel Use self-talk Check in with others (other women with MBC, support groups, professionals)

9. Don’t underestimate the power of sharing and getting support Vilhauer, 2009

10. Process your feelings and make sense of your responses: Create a narrative 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

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

12. Next: What do you have control over?

13. Cognitive responses: Address distress with helpful thoughts Ask yourself what you would tell a friend in this situation Challenge the hindsight bias Minimize critical self-evaluation Be compassionate toward your thoughts – understand but gently zap the “should's” and redirect attention from unhelpful thoughts Insert compassionate response here

14. SHOULD! Zap away the “should’s”

15. Behavioral responses: Address distress with helpful behaviors Minimize unhealthy avoidance (not distraction) when possible Choose helpful behaviors: What is my goal in this situation? What actions are most likely going to help me achieve this goal? Engage in pleasurable activities Engage in relaxation practices (deep and calming breathing; progressive muscle relaxation)

16. Mindfulness Strategies Moment-to-moment, non-judgmental awareness: NOTICING Pay attention to the present moment 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

17. Leading with the mind: Using focused attention Mindfulness meditation http://www.buddhanet.net/audio-meditation.htm http://marc.ucla.edu/body.cfm?id=22 Guided imagery

18. 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

19. Leading with the body: Use your body and senses to discharge and to bring you back to the here and now Progressive muscle relaxation Massage Acupuncture Exercise

20. Finding Meaning in Life and Living Life Fully If uncertainty is about the future, and that which you cannot control, then the antidote is to focus on the present and those things within your control.

21. Women with MBC may face numerous challenges in finding a sense of meaning The desire to live meaningful lives is often intensely heightened Yet many women feel “stuck” and struggle with reorganizing their sense of meaning, identity, and purpose Carpenter et al., 1999; Degner et al., 2003; Hodgkinson et al., 2007; Kaiser, 2008; Park et al., 2008

22. Challenges to one’s sense of identity may include changes in body image, physical limitations, and how much the cancer plays into one’s identity Kaiser, 2008; McWayne & Heiney, 2005; Shapiro et al., 2009; Sundquist & Lee, 2003

23. Changes in one’s identity and a heightened awareness of mortality may result in feeling isolated and different from others Rosedale, 2009

24. There may be a disconnection from sources of meaning, such as meaningful relationships, activities, and responsibilities

25. The meaning of the illness also plays an important role in how women with MBC adjust When cancer holds a more negative meaning (e.g., as a punishment), women may experience more depression and anxiety, and lower quality of life Degner et al., 2003; Park et al., 2008

26. While not everyone has these concerns, a study of women with breast cancer showed their greatest unmet need is support for “existential” concerns Breitbart et al., 2012; Breitbart et al., 2010; Hodgkinson et al., 2007 And, Meaning-Centered Psychotherapy has been effective in enhancing meaning in people with metastatic disease

27. Factors that may affect how one experiences metastatic breast cancer Age Life stage Knowing other individuals who have been through cancer Prior life challenges Coping strategies (both those one was raised with and those developed throughout one’s life)

28. Factors that may challenge finding meaning for women with MBC Existing/competing responsibilities Physical limitations (pain, fatigue) Difficulties with support network Beliefs about oneself Beliefs about the way the world works

29. So, how does one find meaning and live life fully?

30. Again, validate rather than criticize any suffering you may be experiencing: this is HARD!

31. Consider your meaning-making system “I can handle anything that comes my way.” “People get what they deserve.” “Bad things only happen to other people.” “I can’t handle stress or anxiety.” What are the general “core” or central beliefs you have about the way the world works and about yourself?

32. Consider the lens through which you have viewed your cancer experience “I never thought this would happen to me.” “Why do things like this always happen to me?” “I’ve learned a lot from this experience.” “I must have done something that caused this.”

33. Consider which beliefs have been challenged by your cancer experience How have you tried to reconcile the differences between what you believed before and what you believe now?

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

35. “…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; Reker, 1992/2001 Viktor E. Frankl, M.D., 1905-1997

36. Things have no meaning until you supply the meaning. - Carl Jung

37. Consider your valued sources of meaning.

38. He who has a why to live for can bear almost any how. - Friedrich Nietzsche

39. What are YOUR whys?

40. How can you reconnect with these valued sources of meaning? Frankl, 1959/1984

41. Life is a living legacy... with opportunities for second chances every moment... Develop a project that reflects what is most meaningful to you— something you’ve wanted to do, but have not yet done.

42. I am not what happens to me, I am what I choose to become. - Carl Jung

43. Dr. Wendy Lichtenthal’s research has been supported by NIMH F31 MH071999, NCI Training Grant T32 CA009461-23, and NCI R03 CA139944-01. Dr. William Breitbart’s work has been supported by NINR R21 AT01031-02, NCI R01 CA128187-03, NCI R01 CA128134-01A1, The Fetzer Institute, and the Kohlberg Foundation.