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Psychological Aspects of GYN Cancer Survivorship Sharon L. Bober, Ph.D. Director, Sexual Health Program Dana-Farber Cancer Institute Assistant Professor, Dept. of Psychiatry Harvard Medical School Boston, MA November 4, 2016 No Disclosures I, Sharon Bober, have been asked to disclose any significant relationships with commercial entities that are either providing financial support for this program or whose products or services are mentioned during my presentations. I have no relationships to disclose (or disclose relationships). I may discuss the use of vaccines in a manner not approved by the U.S. Food and Drug Administration, but in accordance with ACIP recommendations. Survivorship- What do we mean? • Survivorship has different definitions; typically thought about as living with, through and beyond cancer. • “Survival…begins at the point of diagnosis, because that is the time when patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate and to some extent, long-term future.” - F. Mullan, 1985, New Eng J Med • Good news: majority of GYN cancer patients will become long-term cancer survivors; currently close to 250,000 cervical CA survivors in US. After Treatment…Quality of Life • However, “survivorship” is a complicated phase of care. When treatment ends, survivors face mix of feelings including joy, concern, relief, uncertainty, guilt and fear. • Unfortunately, impact of treatment for cervical cancer can negatively impact quality of life for years after treatment (Park • et al, Cancer, 2007, Wenzel, Cancer 2008) • On-going concerns after treatment ends can include: Physical changes/Loss of Fertility Emotional/psychological changes Difficulty re-establishing social/family roles Financial/occupational changes & burdens Unique Burdens after Cervical CA Cervical cancer survivors face loss of fertility, sexual dysfunction and changes in body image and self-esteem. Survivors also may struggle with guilt/blame/stigma because: Cervical cancer is largely thought of as “preventable” There is effective screening/ “should” have been caught earlier The associations with sexually transmitted virus Hobbs, CA Forum, 2008 Psychosexual Distress after Cervical CA Young survivors are often left with distressing changes related to: Self-concept ◦ Loss of self-confidence, perceived loss of femininity Body image ◦ Experience of accelerated aging, perceived loss of attractiveness Sexuality/Sexual function ◦ Pain, Diminished arousal and desire Reproductive capacity ◦ Loss of fertility The majority of GYN cancer survivors are never asked about these experiences and do not receive education/support to address these issues (Pfaendler et al, Clin Ther, 2015) Sexual Health and Cervical Cancer • Sexual dysfunction is one of most common, enduring and distressing consequence of cervical cancer treatment • Sexual health is often one of the first aspects of“normal”life to be disrupted • Majority of survivors say they were not fully prepared for dealing with changes in sexual function (Matloff & Bober 2009, Elit et al, 2001) • 74-95% of women after GYN cancers have severe, long-lasting sexual problems (Ganz, 1998, 1999). Treatment-Induced Menopause… • Tx-induced menopause can be dramatic; symptoms often more severe, less predictable and longer-lasting than natural menopause. • Hot flashes, Night flushes, Sleep changes, Fatigue • Vaginal dryness, burning, itching, chafing → Pain • Decreased Arousal/Difficulty Reaching Orgasm • Decreased androgen levels/decreases in desire (Schover, 2000, Partridge 2004, 2008) Common Sexual Dysfunction Related to Treatment • Narrowing of the vagina from radiation therapy Pain with sexual activity • Decreased physical response, arousal • Difficulty reaching orgasm • Decreased interest & low desire • Bladder and bowel dysfunction body image/self-esteem • Relationship issues related to changes in sexual function, changes in desire and decreased communication. Risk Factors to Keep in Mind Risk factors associated with negative psychological outcomes: Radiotherapy or multi-modal therapies for treatment • Increased duration of treatment • Young age • Relationship status: single women and women in unstable relationships • History of depression • Sub-optimal coping styles (disengaged, avoidant, denial) (Pearman, Health Qual Life, 2003; • Wentzel, JCO, 2005) Support and Treatment Psychological distress and tx-related sexual dysfunction can be treated! Survivors need to be asked if they are experiencing any bothersome changes in sexual health or sexual function ◦ “Many women who have gone through this treatment notice changes in sexual function, has that happened to you?” ◦ “Changes in sexual function and body image are common after GYN cancer, is that something you have experienced?” Need for inquiry as to whether women are experiencing any kind of distress that is bothersome or getting in the way of normal function and ask if they want some support. ‘This is the price I had to pay…” Women often do not know that sexual dysfunction such can be treated/improved! ◦ Women need instructions/coaching for how to use vaginal dilators, vaginal moisturizers, pelvic floor exercises and personal products. Psychological distress needs to be addressed! Critical to empower patients & provide education/information as needed Our responsibility as clinicians to have resources/referral sources available for women ◦ Counseling, group support, written resources, appropriate referrals Resources are available! http://www.macmillan.org.uk/information-andsupport/coping/relationships/your-sex-life-and-sexuality http://www.cancer.org/treatment/treatmentsandsideeffects/phy sicalsideeffects/sexualsideeffectsinwomen/sexualityforthewoman /sexuality-for-the-woman-with-cancer-toc https://www.livestrong.org/we-can-help/finishingtreatment/female-sexual-health-after-cancer DFCI Sexual Health Program 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. [email protected]