Optimizing Psychosocial Wellness and Quality of Life After Cancer Treatment

Anne Coscarelli, Ph.D.

Founding Director Simms/Mann – UCLA Center for Integrative Oncology UCLA’s Jonsson Comprehensive Cancer Center Adjunct Professor of Medicine – Hematology/Oncology David Geffen School of Medicine Clinical Professor – Department of Psychology Psychologist Survivor Education Day UCLA LiveSTRONG TM Survivorship Center of Excellence May 18, 2013

Stress Test

• The next slide contains a picture of two identical dolphins. Research has shown that

the more differences you see between the dolphins,

the more stressed you are. • Look at the picture carefully • Raise your hand if you see any differences between the two pictures.

Individual Difference in the Journey

Cancer as Foreground, Cancer as Background

“ Someone likened cancer to a pink elephant, and the pink elephant initially is right there in front of your face, you know… and then as you get better, the pink elephant maybe goes to another room. And then as you get much better, the pink elephant goes down the street, but it’s always there and you always know it’s there. And, I think that , as you approach appointments, the pink elephant [from] down the street, you know, comes in the living room again.” –Nurses Experiences as Cancer Survivors: Part 1 Personal De Marco RF, Picard C & Agretelis J. Oncology Nursing Forum, 31 (4) 2004.

The Journey of Cancer Survivorship is Defined by Movement

• Movement of Cancer from Foreground Background • Passage of Time • Movement of Flux in Psychological States – Shifts from fully successful adaptation to acute fear anxiety and worry – Shifts from states of well-being to states of loss

Periods of Vulnerability

• New Events or Triggers • Ongoing • Transitions Coscarelli, A. Recklitis, C., Ahmed, K. (2011) Long-term Psychological Well-being: Strategies for Assessment and Intervention. In Feuerstein, M. & Ganz, P.A. (eds). Health Services for Cancer Survivors, New York: Springer.

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Periods of Vulnerability

• New Events or Triggers – New symptoms of unknown origin • Work-up of symptoms • Awaiting results of work-up/watch and reassess – Diagnosis of late effects – Secondary cancer – New primary – New onset of other health problems – Scientific findings altering treatment strategies for future patients – Recurrence of cancer – Diagnosis friends/family – Notable cancer-related media events Coscarelli, A. Recklitis, C., Ahmed, K. (2011) Long-term Psychological Well-being: Strategies for Assessment and Intervention. In Feuerstein, M. & Ganz, P.A. (eds). Health Services for Cancer Survivors, New York: Springer.

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Periods of Vulnerability

• Ongoing – Bothersome continuing symptoms – Regular medical follow-up/surveillance • Transitions – End of treatment – Transitions in adjuvant treatment (e.g., transition on/off trastuzumab, hormonal therapy) – Career and health insurance changes – Reproduction Initiation – Stress and anxiety become imprinted Coscarelli, A. Recklitis, C., Ahmed, K. (2011) Long-term Psychological Well-being: Strategies for Assessment and Intervention. In Feuerstein, M. & Ganz, P.A. (eds). Health Services for Cancer Survivors, New York: Springer.

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Does Cancer Still Exist?

• In the body?

• In mind?

Fear of Recurrence

• Prevalent in Cancer Survivors – Kornblith, Herndon ,Zuckerman et al. Comparison of psychosocial adaptation of advanced stage Hodgkin’s disease and acute leukemia survivors.

Ann Oncol,

9, 1998.

• Ranges 5%-89% – Ronson, Body. Psychosocial rehabilitation of cancer patients after curative therapy.

Support Care Cancer

10, 2002.

• Described as largest concern of breast cancer patients – Spencer, Lehman, Wynings, et al. Concerns about breast cancer and relations to psychosocial well-being in a multiethnic sample of early stage patients.

Health Psychol

18, 1999.

• Persists at least up to 9 years post TX – Mishel, Germino, Gil et al. Benefits from an uncertainty management intervention for African-American and Caucasian older long-term breast cancer survivors

. Psychooncology

14, 2005.

Individual Characteristics

• The extent to which there are ongoing emotional or psychosocial difficulties depends on the degree of disturbance in – Life roles – Goals – Expectations • Younger age predicts emotional fallout – More anxiety and depression – More distress about cancer reminders – More stressful appraisals of cancer – Lower health related quality of life

Post -Traumatic Growth

• “Growth” – Individual undergoes a stage in their personal development that extends beyond their previous functioning

Benefits (Post -Traumatic Growth)

• Perceived changes in self – Feeling stronger – More self assured – More experienced – More able to face future challenges

Benefits (Post -Traumatic Growth)

• Changes in interpersonal relationships – Ties with other people are strengthened – The need to share and express one’s feelings increase • Changes in spirituality or the philosophy of life – Greater appreciation of what one has – Becoming easier for the individual to distinguish what is really important from what is of secondary importance – Change in their scale of values (Tedeschi, Park, Calhoun, 1998)

Stress

• Not a “formal” psychiatric diagnosis • A real and valid experience • A normal response to life’s problems and a consequence of cancer – throughout the journey

Definition of Stress

• A physical, chemical, or emotional factor that causes bodily or mental tension • A state resulting from a stress;

especially

: one of bodily or mental tension resulting from factors that tend to alter an existent equilibrium Merriam Webster online dictionary

Stress

• An accurate way to describe your reaction to diagnosis, experience of illness, uncertainty of the future • A code word for anxiety or depression…

The Stress of Diagnosis

• Stress and anxiety become imprinted • Both in the mind and the body • An “extreme traumatic stressor” – For patients and families • Activation of the “Fight or Flight” Response

The Fight or Flight Response

• Instinctive response • Evolutionary instinct, responsible for keeping your ancestors alive long enough for you to be here today • Whole systems response to immediate threat • Sympathetic Nervous System

The Fight or Flight Response

• Sympathetic Nervous System – Heart races – Muscles tighten – Pupils dilate – Shallow breathing – Blood flow directed to the heart for action – Lots of hormones power up • Great and necessary system • Body also can down regulate, create an automatic relaxation response

The Fight or Flight Response

• Parasympathetic Nervous System – Heart slows – Muscles looses – Pupils constrict – Deep breathing – Blood flow re-directed back to other parts of the body – Reduction in adrenaline production

The Challenge with Cancer

• You may have a life threatening or life shortening illness and it may not go away • Ongoing dangers • In addition to

normal

stresses of living

The Challenge with Cancer

• How do you manage your sense of – Threat – Danger – Stress • When the threat is – Not immediate – Not imminent – Does not pass – Becomes chronic • When the automatic relaxation response does not come

Managing Stress is NOT Controlling Stress

• Control is a word that gets people into trouble • Control is actually part of the problem, a goal we cannot meet • Myth about controlling all kinds of things that are outside of our control • More honest/

useful

to think of this process of managing stress as adding to your sense of well being

Key is Managing Stress

• Many different ways to manage stress • Mind and body intimately connected • Thoughts influence the body, the body influences the mind • Serve as feedback loop • Specific types of coping strategies

“Coping can be defined as cognitive, behavioral, or social strategies that patients and families use to bring about relief in relation to a perceived threat or a demand and to restore equilibrium.”

–

Singer, JE Some issues in the study of coping. Cancer, 53, 1984

Coping

• Three decades of research • A process of self-regulation • Patients use a variety of strategies • Intra-individual and contextual

What We Know about Coping

• Each person has their own coping strategies • Not every coping strategy is going to work for every person • Some coping strategies are healthier than others • Past coping strategies may be helpful to you or not...

– Strengthen healthiest of coping strategies – Add some new ones

Healthy Coping

• Multiple strategies • Flexible strategies

Healthy Coping

• Problem-solution oriented & confronting issues • Information seeking • Taking one day at a time & focus on real issues • Realistic optimism & keeping a sense of balance • Manage stress levels • Accepting your feelings & express emotions • Using support network/asking for help, cohesive family • Working with your healthcare team, compliance • Knowing how to use distraction and humor Schurermeyer & Scribner, 2009

What are Less Healthy Coping

• • • • • • • Deny or avoid crisis All or none thinking Avoid information Repress negative emotion Remain isolated Remain passive Focus on what is lost without balancing with gains Schurermeyer & Scribner, 2009

Resilience

“ At the heart of human adaptation is resilience, the ability to create a positive world for ourselves, often in the face of stressful life experiences, and the ability to resist being overtaken by negative experiences when they seem to be overwhelming”

– John Reich, social psychologist

Interventions to Enhance Coping

A State of Being

• “Learning to be in this moment” • “Fear Forward, Anger Backward”

Mindfulness or Mindful Awareness

• The process of the moment –to moment attention to present experience with a stance of open curiosity • Distinction between doing and being • Focusing on – Breath – Bodily sensations – Sound – Eating • Can be applied in any situation or environment (example cell phone ringing)

Attitudinal Foundations of Mindfulness

• Non-judging: Impartial witness to your own experience • Patience: Sometimes things must emerge in their own time • Beginner’s mind: Willing to see everything for the first time • Trust: Listening to your own inner self • Non-striving: Back off • Acceptance: Seeing things as they actually are in the present • Letting go: Our minds like to hold on to thoughts, patterns, judgments. [Jon Kabat-Zinn]

Mindfulness Meditation-Based Stress Reduction vs Wait List Control (N=90)

• 7 week sessions (1.5 hrs) • Education • Visualization • Gentle yoga stretches • Relaxation response and physiological correlates • Mindfulness with attention to breath • Relationship between breath and emotional responses, cognition and emotion Speca M, Carlson L, Goodey E, Angen M,. A Randomized, Wait-list Controlled Clinical Trial: The Effect of a Mindfulness Meditation-Based Stress Reduction Program on Mood and Symptoms of Stress in Cancer Outpatients,

Psychosomatic Medicine

62:613-622 (2000).

Mindfulness Meditation-Based Stress Reduction vs Wait List Control (N=90)

• Dropouts more mood disturbance • 65% Reduction in mood disturbance in TX group; – Anxiety, Depression, Anger, Confusion, Increased vigor • 31% reduction of total stress symptoms in TX group – Upper respiratory tract symptoms, habitual patterns, emotional irritability, & Total stress score • Daily meditation in treatment group = 32 minutes suggesting behavior led to changes Speca, M, Carlson, L, Goodey, E, Angen, M, A Randomized, Wait-list Controlled Clinical Trial: The Effect of a Mindfulness Meditation-Based Stress Reduction Program on Mood and Symptoms of Stress in Cancer Outpatients,

Psychosomatic Medicine

62:613-622 (2000)..

Learn Techniques to Create the Relaxation Response

Breathing Techniques

• • • • Four Square Breathing – 1Take a deep breath in for four seconds – 2 Hold your breath for four seconds – 3 Slowly exhale for four seconds – 4 Pause for four seconds, doing nothing, then repeat the process as many times as you need until you calm down Attention to Breath Signal Breath Diaphragmatic Breathing

Autogenic Training

• Allows the conscious mind to connect to the unconscious control of the autonomic nervous system – A form of self-hypnosis • Typical training – Heaviness – Hand-warming – Breathing – Warm belly – Slow heart beat – Cool forehead • Progressive Muscle Relaxation

Guided Imagery

• A safe place • A place in nature that is relaxing • Using visualization to create that space

Cognitive Reframing

• How you evaluate a situation • Can you change the way you view it • Is there a cognitive understanding that can help you to feel less anxious, worried, overwhelmed • “I do not have cancer now, I can focus on the now ….”

Recreation/Fun Quotient

• Hours of fun

÷

168 hrs wk • 7 hours/wk = 4% • 3 hours/day-21hrs wk = 12% • What else is missing/or low?

– Family time/taking care of kids or parents – Relationships – Religious spiritual activities Activity Sleeping Self- grooming Hours spent per week 56 11 % time 33% 6% Food preparation & eating Working Commuting to work Exercise Maintenance (e.g. shopping for groceries) Total 21 40 5 3 14 150 12% 24% 3% 1% 8% 87%

Fun Quotient

• Cancer takes a toll on a person’s fun quotient • Sum up the number of hours spent on – Seeing a member of the medical team – Getting tests – Setting appointments – Traveling to medical centers – Getting treatments – Taking medications – Calling insurance companies or billing centers at hospitals – Waiting – Not feeling well and managing symptoms

Fun Quotient

• Be mindful of your fun quotient • Take “Cancer vacations” • Plan goals for fun and recreation and rebuild fun into your life with intention • Cancer does not have to remove all fun

Social Network

• Connection to a social network can buffer people from the stress/distress of the worry about recurrence or illness • Your perception of adequate social support is important • Linked to lower levels of anxiety/depression better social adjustment and higher self-esteem • Improves quality of life & improves coping • Enhances physical and mental well-being Lewis JA, Manne SL, DuHamel KN, et al. Social Support, Intrusive Thoughts and Quality of Life In Breast Cancer Survivors,

PJ of Behavioral Med, 24: 231-245 (2001).

Social Network

• Breast Cancer patients, age 30-81, M=59.2

• M 6.7 years post tx (1-15 yrs) Lewis JA, Manne SL, DuHamel KN, et al. Social Support, Intrusive Thoughts and Quality of Life In Breast Cancer Survivors,

PJ of Behavioral Med, 24: 231-245 (2001).

Social Network

• “There is at least one person whose advice I really trust” • “I feel there is no one with whom I can share my most private worries and fears” Lewis JA, Manne SL, DuHamel KN, et al. Social Support, Intrusive Thoughts and Quality of Life In Breast Cancer Survivors,

PJ of Behavioral Med, 24: 231-245 (2001).

Purpose and Meaning

• May be spiritual or religious • Having meaning helps to mitigate suffering • Being mindful of what is important to you • Post Traumatic Growth

Man is not destroyed by suffering; he is destroyed by suffering without meaning. – Vicktor Frankl

None of us will ever accomplish anything excellent or commanding except when he listens to this whisper which is heard by him alone."

– Ralph Waldo Emerson

Spirit implies energy and power. The word spirituality describes an awareness of relationships with all creation, an appreciation of presence and purpose that includes a sense of meaning.

-Christine Pulchalski

Exercise and Nutrition

• Exercise and nutrition key in emotional well-being • Both can be helpful coping strategies • Nutrition and CAM can also be an indicator of distress • Source of empowerment and control • Exercise a stress reducer

When is Anxiety a Problem?

• Worrying more often than not, even trivial things • Being unable to control your worries • Being unable to be reassured or distract yourself • Becoming preoccupied with rituals/habits/behaviors (compulsions) • Associated physical symptoms such as palpitations, sweating, shortness of breath…

When is Depression a Problem?

• Feeling depressed, prolonged sadness and/or not enjoying things, more often than not for at least 2 weeks: – Sleep problems – Decreased interest in usual activities – Guilty feelings – Fatigue/low energy – Concentration problems – Appetite changes – Feeling slower or quicker than usual (internally) – ANY SUICIDAL THOUGHTS, INTENTIONS, or PLANS

Psychiatric Medications

• Referral to a psychiatrist for medication evaluation • Appropriate use of anti-depressants and anti-anxiety agents • Large number of patients do not take or stop taking these meds – They are started on high dosages – Side effects not explained adequately and monitored – Drugs are not tailored to the needs of the individual

Treatments for Anxiety & Depression

• Medication – Antidepressants – Mood stabilizers • Prefer psychiatrist to oncologist/primary care doc • Cognitive/Talk Therapy • Self-management/rehabilitation – Physical activity (to the degree possible) – Pushing self over the wall toward social and pleasurable activities – Reinforcement • Techniques previously presented

Three Wishes

• Cancer could be prevented • Cancer could be cured for everyone • Cancer patients and their families receive optimal integrated medical, psychosocial and spiritual care throughout the continuum of the cancer journey

Thanks to the

Simms/Mann Advisory Board

• • • • • • • • • Jeff Dinkin, Chair William J. Ellison Lauren Geisler Fite Phillip Gonzales Sara Hurvitz, M.D.

Lori Jacobsen J. Ronald King Jo Ann Meth Richard Miller • • • • • • • • Adam Nimoy Allan Orenstein, M.D.

Saul Rosenzweig Mary Saltzburg Victoria Mann Simms, Ph.D.

Larry Spiegel Zev Wainberg, M.D.

Steven Yamshon

For their support, allowing us to provide most of our services to patients and families touched by cancer without fees

Thanks to the

Simms/Mann Family Foundation

for

their continued support and recognition of the needs of patients with cancer and their family members

Dedicated to

TED MANN

Former Chairman Mann Theatres His dedication, compassion & commitment started the Center

The End