9/19/16. Disclosures. Sexuality and Intimacy. No conflicts to disclose. As recognized by WHO: Sexual health is a fundamental human right

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fundamental human right Sexual health is linked to quality of life (QOL) Sexual dysfunction associated with anxiety, depression, relationship

1 Sexuality and Intimacy Sharon L. Bober, Ph.D. Director, Sexual Health Program Dana-Farber Cancer Institute Assistant Professor, Dept. of Psychiatry Harvard Medical School Boston, MA June 19, 2015 No conflicts to disclose Disclosures As recognized by WHO: Sexual health is a fundamental human right Sexual health is linked to quality of life (QOL) Sexual dysfunction associated with anxiety, depression, relationship stress Intimacy /positive experience of sexuality can ease anxiety, release stress, maintain sense of connection and promote experience of recovery 1

Culture saturated with graphic images but lack of frank conversation about real sex Confusion about who is responsible for initiating conversation Assumptions / Misinformation / Anxiety Clinicians

behavior, emotion, cognition, identity NOT just intercourse or act leading to climax Sexual response simultaneously physical and psychological: engaged brain and body Always in context -

2 Culture saturated with graphic images but lack of frank conversation about real sex Confusion about who is responsible for initiating conversation Assumptions / Misinformation / Anxiety Clinicians often aren t sure what to say if patients endorses a problem (Pandora s box) A fundamental and life-affirming element of human experience that crosses the lifespan Multi-dimensional: physiology, behavior, emotion, cognition, identity NOT just intercourse or act leading to climax Sexual response simultaneously physical and psychological: engaged brain and body Always in context - past/present/future Wide and varied range of normal; different meanings and levels of importance to each individual Sex is often one of the first aspects of normal life to be disrupted after diagnosis and/or treatment. Sexual dysfunction is one of most common, enduring consequence of cancer treatment and risk-reduction surgery (BPSO, PBM) Majority of survivors/previvors say they were not fully prepared for dealing with changes in sexual function 2

Impact of Treatment Each type of treatment can have direct impact on

Therapies Mind / Body/ Relationship 50% - 96% of BC survivors report

(Ganz 1998, 1999) 74-95% of women after GYN cancers have severe,

Previvors often report disruptions in sexuality and body image after

3 Impact of Treatment Each type of treatment can have direct impact on sexuality and body image Surgery Chemotherapy Radiation Hormonal Therapies Mind / Body/ Relationship 50% - 96% of BC survivors report at least one major & longlasting sexual health problem. (Ganz 1998, 1999) 74-95% of women after GYN cancers have severe, longlasting sexual problems (Ganz, 1998, 1999). Previvors often report disruptions in sexuality and body image after prophylactic surgery but get little attention because they don t have cancer. (Matloff, Barnett & Bober, 2009; Sanchez- Varela, Nelson & Bober, 2010) Who is at Increased Risk? Women with previous sexual problems Younger women (premenopausal before treatment) Women with history of depression or anxiety Women having relationship difficulties Women who are not in partnered during time of diagnosis/ treatment 3

What women say about sex after treatment Its hard to say it, but I feel like I ve been neutered (age 41) Of course, I am grateful to

(age 48) I d rather just read a book I have really lost all interest.

(age 38) My older sister thinks she understands, but she s had her kids, she s married. I am 28 yrs old and she has no idea.

4 What women say about sex after treatment Its hard to say it, but I feel like I ve been neutered (age 41) Of course, I am grateful to have had choices, but I am also angry. At some point every day, I think about it. (age 48) I d rather just read a book I have really lost all interest. It s a problem, but I am busy with kids & working & not sure if there is anything that can be done anyway. (age 38) My older sister thinks she understands, but she s had her kids, she s married. I am 28 yrs old and she has no idea. No one brought it up because I guess people assume its not relevant for me anymore. (age 62) Bober & Patenaude, 2011 Changes in body image & self-esteem Pain (discomfort with penetration) Decreased physical response, arousal Difficulty reaching orgasm Decreased interest & low desire 4

Integrative Model of Sexual Renewal Body Vaginal Health General well-being Mind Cognition Emotion Motivation Social Current Past Bober & Varela, JCO, 2012 Starting with the Body First step in

5 Integrative Model of Sexual Renewal Body Vaginal Health General well-being Mind Cognition Emotion Motivation Social Current Past Bober & Varela, JCO, 2012 Starting with the Body First step in renewing sexual health relates to restoring overall health and well-being Identify and address the mechanics underlying discomfort (e.g., improving vaginal health) Embracing lifestyle and behavior changes that a women chooses for herself (e.g. exercise, improving sleep, stress reduction such as yoga, dance) Making choices that allow sense of personal empowerment Learning about our bodies/ non-judging exploration Disrupted Ovarian Functioning: Loss of Estrogen Chemotherapy-induced (adjuvant tx for br ca) Surgically-induced (oophorectomy) Hormonal (Tam/Aromatase inhibitors) Vaginal Changes: Blood Supply, Glycogen, changes in ph ê vaginal length and diameter ê lubrication ê elasticity sexual pain é inflammation, infection Vulvar Changes: Collagen, Adipose tissue Testosterone (50% of T made produced by ovaries) 5

9/19/16 Tamoxifen Hot Flashes, Vaginal discharge, Vaginal tightness, Discomfort with intercourse Mixed results re Sexual Functioning/ Some studies find no

Fallowfield, 2008) Primary Focus: Vaginal Health Estrogen receptors in the vagina, vulva, pelvic floor muscles, urethra, and bladder.

6 9/19/16 Tamoxifen Hot Flashes, Vaginal discharge, Vaginal tightness, Discomfort with intercourse Mixed results re Sexual Functioning/ Some studies find no change in functioning. One larger study: 54% of women reported pain with intercourse and vaginal dryness AIs More pronounced profile regarding menopausal symptoms. Dryness, dyspareunia, atrophic process significant 58% women on AI s report dryness as problem (Dennerstein et al, 2000) (Buijs et al, 2008; Cella & Fallowfield, 2008) Primary Focus: Vaginal Health Estrogen receptors in the vagina, vulva, pelvic floor muscles, urethra, and bladder. Vagina thrives on estrogen; lack of estrogen leads to dryness and tightness, tissue becomes thinner & more fragile, can tear easily. Dryness, itching, burning, pain Painful sex: why keep trying? Leads to vaginismus pain cycle Not just about sex: e.g., pain during pelvic examinations Renewing Vaginal Health Moisture Stretch Bloodflow 6

Restoring Moisture First line: Vaginal moisturizers & lubricants Learn about vaginal moisturizers (3-5x week as needed) Lubricants: Water-based/Silicone, Glycerin-free, perfume-free Coconut oil for

Stretch / Managing Pain The pelvic floor in innervated by limbic system and highly reactive to emotional stimuli Pelvic Floor Therapies very helpful for pain Urogynecologic issues Learned Relaxation

7 Restoring Moisture First line: Vaginal moisturizers & lubricants Learn about vaginal moisturizers (3-5x week as needed) Lubricants: Water-based/Silicone, Glycerin-free, perfume-free Coconut oil for perineum/ perineal massage Second Line: Possible use of vaginal estrogen Estring vaginal ring stays intact up to 3 months Vagifem - tablet that sticks to vaginal wall Estrace vaginal cream Optimizing Stretch / Managing Pain The pelvic floor in innervated by limbic system and highly reactive to emotional stimuli Pelvic Floor Therapies very helpful for pain Urogynecologic issues Learned Relaxation of the pelvic floor Muscles Toning Devices Kegel Exercises Pelvic PT Current RCT examining PF relaxation with Replens and olive oil lubricant (Mok et al) Vaginal Dilators Mechanical stretching of tissue may increase elasticity Need to use Dilators with proper lubrication Allows woman to regain sense of control Specifically indicated when woman has developed vaginismus or any muscle-clenching reaction triggered by pain/fear 7

Increasing Bloodflow for Vaginal Health Restoring vaginal health after menopause supported by increasing blood flow to vaginal tissue Small

orgasmic satisfaction and sexual distress (Brotto et al, 2008) New Options for Vulvo-Vaginal Atrophy Microablative laser device to stimulate

8 Increasing Bloodflow for Vaginal Health Restoring vaginal health after menopause supported by increasing blood flow to vaginal tissue Small Clitoral vacuum pump designed to increased genital blood flow approved by FDA RCT to show EROS had positive effect on desire, arousal, orgasmic satisfaction and sexual distress (Brotto et al, 2008) New Options for Vulvo-Vaginal Atrophy Microablative laser device to stimulate collagen & reduce atrophy Intravaginal dehydroepiandrosterone (DHEA) Selective estrogen receptor modulators (SERM) (e.g. Ospemifene) Essential Element: Mind Cognition, Emotion and Motivation Education/Information Emotional validation Need to learn how emotion and cognition are related Cognitive-Behavioral Therapy Automatic thoughts Assumptions/Cognitive Errors Focus on support of autonomy Increasing self-efficacy, choice 8

Body Image and Self-Esteem Body image: informed by past history, current experience and assumptions about the future Body image and sexual issues may become

Body image issues more problematic for woman with: Decreased physical vitality (more sedentary) Poor social support/ lack of current relationship Advanced cancer

ability/fatigue Feeling flawed, unattractive self-esteem Changes are hard to talk about All of this has direct impact on libido Essential Element: Relationship Focus

9 Body Image and Self-Esteem Body image: informed by past history, current experience and assumptions about the future Body image and sexual issues may become increasingly more pressing over time (Graziottin, 2006). Body image issues more problematic for woman with: Decreased physical vitality (more sedentary) Poor social support/ lack of current relationship Advanced cancer Lymphedema Body Changes and Body Image Obvious : Scars, body changes, surgical reconstruction Less obvious or Hidden : Loss of sensation Changes in physical ability/fatigue Feeling flawed, unattractive self-esteem Changes are hard to talk about All of this has direct impact on libido Essential Element: Relationship Focus on relationship: Past, Present, Future Restoring sexuality in social/relational context Understand sexual history, previous norms for communication, past/current expectations Plan for incorporating partner into counseling Couple-focused communication strategies Sensate Focus modifiable as needed 9

by illness Body image changes, feeling unattractive Painful sex Medication side effects

10 9/19/16 Not in the Mood? Low Desire Stress of illness Fatigue Sadness / Depression Relationship issues made worse by illness Body image changes, feeling unattractive Painful sex Medication side effects Need to assess and problem-solve about challenges related to mind/body and relationship You can get your groove back! Acknowledge change/accept loss/validating new normal Embrace opportunity to chart new course Appreciate opportunity to expand one s repertoire Learn to shift focus to pleasure and sensuality Choose to be optimistic! 10

Harnessing the Power of the Mind Cognitive-Behavioral Intervention Cognitive Restructuring Cognitive Cueing:

Awareness Using erotica: reading, video, fantasies Body Attunement: Coping with Changes in Arousal and Orgasm

outside of old habits Typically women need increased intensity and duration of stimulation (especially clitoral)

Focus on Behavior: Primacy of Action Re-focus on Pleasure and Sensuality Begin slowly Make a plan Genital

11 Harnessing the Power of the Mind Cognitive-Behavioral Intervention Cognitive Restructuring Cognitive Cueing: Recognizing sexual thoughts - keeping a Desire Diary Guided imagery, mindfulness Relaxation exercises/body Awareness Using erotica: reading, video, fantasies Body Attunement: Coping with Changes in Arousal and Orgasm Emphasis on integrating mind and body Rediscovery of pleasure, sensation in body post breast cancer or BPM Stepping outside of old habits Typically women need increased intensity and duration of stimulation (especially clitoral) Value of relaxation/mindfulness/attunement Body scan, progressive muscle relaxation Use of self-touch, vibrators Focus on Behavior: Primacy of Action Re-focus on Pleasure and Sensuality Begin slowly Make a plan Genital self-exploration/directed self-touch Sensate Focus exercises with partner Lifestyle changes Exercise, physical activity Stress management Relaxation 11

Project SHARE: A Sexual Health Intervention after RRSO Study Aim: To develop & pilot a novel intervention for managing sexual dysfunction in young women after RRSO.

order to promote behavioral change and well-being.

12 Project SHARE: A Sexual Health Intervention after RRSO Study Aim: To develop & pilot a novel intervention for managing sexual dysfunction in young women after RRSO. Theory-driven intervention based on integration of cognitivebehavioral therapy with targeted sexual health Intervention aimed at facilitating self-efficacy (autonomy), competence and relatedness in order to promote behavioral change and well-being. Study Design Single-arm pilot intervention study Single half-day group session with 3 primary modules: 1) Sexual health education 2) Body awareness and relaxation training 3) Mindfulness-based cognitive exercise & creation of personalized action plan Take-home educational materials Two tailored individual telephone counseling sessions Eligibility Women who: - Underwent RRSO for risk-reduction. - < 50 years of age at intervention. - Endorsed at least 1 symptom of distressing sexual dysfunction (e.g., decreased sexual interest). Exclusion criteria included history of OV CA, history of pelvic radiation, or chemotherapy within one year. Women with history of other cancers were not excluded unless active treatment had ended less than one year prior. 12

13 Measures Completed at baseline and 2-months post-intervention. Measure Female Sexual Function Index Sexual Attitude Scale Sexual Knowledge Brief Symptom Inventory (BSI-18) Workshop Evaluation Survey* Participation Feedback Content Sexual functioning (Overall sexual function score and domain scores, including desire, arousal, lubrication, orgasm, satisfaction, and pain). Sexual self-efficacy after PBSO. True/false sexual knowledge for successful management of sexual dysfunction post-pbso. Psychological distress (Global Severity Index score and domain scores, including somatization, depression, and anxiety). Satisfaction with group session. Satisfaction with intervention as a whole. Participants 43 participants; 37 women completed pre- and postintervention assessments - Mean age of 44.4 (range, ) years at intervention. - 92% were White, non-hispanic. - 84% were married or living as married. - 89% had obtained a college degree or higher. - Mean of 3.8 (range, ) years since PBSO. Results: Paired Sample t-tests (FSFI) ** * * Higher 20.0 functioning 18.0 * Mean Score 2.0 ** Desire Arousal Lubrication Orgasm Satisfaction Pain Lower 10.0 functioning Overall Pre-Intervention Post-Intervention sexual * p <.05 function ** p <.01 13

14 Results: Sexual Attitude and Knowledge Sexual Attitude Scale scores improved significantly (m = 63.5 vs. m = 75.7; p <.001) Sexual Knowledge also improved significantly (m = 7.97 vs. m= 9.06; p <.001) Sexual Attitude Scale Sexual Knowledge Mean Pre-Intervention Post-Intervention Mean Pre-Intervention Post-Intervention Results: Workshop Evaluation Among participants in the group session: - All women reported feeling certain or very certain that they had learned skills to help them cope with the sexual side effects of PBSO. - 98% reported feeling more empowered to address challenges related to sexuality/intimacy. - 95% reported satisfaction with the content of the group session. Conclusions Women reported sizable improvements in sexual functioning, psychological distress, sexual self-efficacy, & sexual knowledge post-intervention. Moderate effect sizes were noted regarding improved sexual function and decrease of anxiety from a brief, relatively lowintensity intervention. Women were satisfied with the intervention & results support hypothesis that brief, multi-modal intervention could be an acceptable format for sexual rehabilitation 14

15 Co-Investigators Judy Garber, MD Andrea Patenaude, Ph.D. Christopher Recklitis, Ph.D., MPH Acknowledgments Julie Najita Ph.D. Leslie Schover Ph.D. Jenny Bakan BA Cheryl Madeiros-Nancarrow MA Funding: NIH1 R03 CA A1 Whole Person Intervention Information and Education Body/Mind Approach: body mapping, progressive muscle relaxation, pelvic floor exercises CBT identifying & challenging negative automatic thoughts Social Support sex in relational context- Couples Work as needed Written materials (hard copy and/or web-based) by ACS (Sexuality and Cancer), NCI. LAF Biblio-therapy (e.g., L Schover, A Katz, S Kydd,) YouTube Finding the right team (counseling, PT, GYN etc) Sexual Rehab Counseling (couple, individual) Locating personal products and using them 15

16 Mission: To help patients restore healthy sexual functioning as an integral part of overall survivorship care. The SHP is a multi-disciplinary clinic that incorporates medical and behavioral approaches to successfully treat sexual dysfunction after cancer. The SHP aims to develop, evaluate and disseminate practical programs of sexual rehabilitation for a wide range of cancer survivors. sexualhealthprogram@dfci.harvard.edu. 16

Body image and sexuality issues after surgery or cancer

Body image and sexuality issues after surgery or cancer Sharon L. Bober, Ph.D. Director, Sexual Health Program Perini Family Survivors Center Dana-Farber Cancer Institute June 26, 2010 Why doesn t sex