Cancer & Sexuality: addressing the taboo subject

1. Cancer & Sexuality: addressing the taboo subject

2. Objectives • Present the relevance and importance of including conversations about sexuality during cancer treatment. • Discuss and address barriers to including sexuality during cancer treatment. • Provide an overview of common problems, related to treatments and otherwise, faced by cancer patients relating to sexuality. • Discuss conversation starters and “sexuality inclusive” models for providers. • Provide examples of concrete suggestions that could be given by providers to patients.

3. Sexuality is a part of being human and living a full life and the well-being of many individuals centers on affectionate, loving relationships that contribute to health and quality of life. … It is no different when an individual is undergoing cancer treatment!

4. Survival above sexuality?

5. Sexuality and intimacy are not life or death issues—but are very real quality of life issues. Oftentimes I hear people say, “This [sex] should be the last thing on my mind in the midst of all the other things in my life.” Or a partner says, “It’s selfish of me to be concerned about sex.” –Sage Bolt, Oncology Counselor

6. A multinational European study found that 23% of men with prostate cancer had received written material related to sexuality, but 46% stated that sexuality counseling would have been helpful(Kirby et al, 1998). • A 1999 needs assessment of 73 women with gynecologic cancer attending follow-up care found that almost half the participants had received little or no information on sexuality and cancer, while 60% of the sample wanted more information(Bourgeois-Law et al, 1999).

7. Preferred timing for information was after diagnosis but before treatment (23.3%), or after completion of treatment (39.5%). • The women in this same needs-assessment study preferred one-on-one discussion with a health care provider (60.3%) or at least a pamphlet (44.8%) to receive this information.

9. Phases of Sexual Response Cancer and cancer treatment can cause changes in any phase of the sexual response… … but there is a problem!

11. Common Problems • Weight loss. • Fatigue, exhaustion, restriction of movement. • Discharge from wounds. • Significant pain & disfigurement associated with surgical scars, and radiation. • Depression/ psychological distress. • Unwanted side effects from Rx. • Body as well as body image may have changed: inability to perceive oneself as sexual being, feeling undesirable or sexually unattractive.

12. Common Feelings • Grief, for old ways of being sexual and intimate • Embarrassment • Vulnerability • Fear of dying or losing a partner • Frustrating/anger • Depression

13. Effects of cancer on male sexuality will not be discussed but is still a very important area of concern for men!

14. Cancer Treatment in Women: Chemotherapy • Ovary damage • Possible early menopause • Decrease in libido • Fertility concerns • Vaginal dryness and soreness • Raw throat from vomiting • Loss of desire • Neuropathy

15. Cancer Treatment in Women: Hormone Therapy • Some hormone treatments may cause sexual changes, but less likely than chemo. • Vaginal dryness (e.g. Tamoxifen for breast cancer and Aromatas inhibitor medicines to prevent breast cancer recurrence) … IMPORTANCE OF LUBE EDUCATION

16. Cancer Treatment in Women: Radiation Therapy • Ovary damage • Possible early menopause • Direct damage to vagina • Inflammation can cause vaginal walls to stick together during healing • Scar tissue along the vagina canal after healing • Vaginal Dilators • Radiation ulcers

17. Cancer Treatment in Women: Surgery • Pelvic surgery can change the vagina • Shortening (radical hysterectomy) • Removal of vagina wall (bladder or colon removal)* • Removal of tissue can lead to scar build-up • Sex is painful • Loss of erotic triggers • Removal of some or all of the vulva • Breast • Early menopause • Sense of body image**

18. Barriers to Communication: Physician Perspective • Emphasis of care on cure. • “Not knowing where to begin.” • Inadequate training. • Presumption that post-menopausal women are no longer sexually active. • Assumption that patient not asking is evidence of not wanting to know. • Embarrassment and discomfort with own sexuality. • Fear that asking is an invasion of patients’ privacy.* • Perception that the patient is not ready.*

20. Initiating the conversation • How has this treatment affected you sexually? • How has this experience affected your relationship with your partner or yourself? • Have you found that your vagina is drier since taking tamoxifen? How has this affected you sexually? • Many women/men feel different about themselves and their bodies after this kind of surgery. How do you feel about yourself after the operation?

21. Models of Inclusion:PLISSIT Models • P - Permission • LI - Limited Information • SS - Specific Suggestion • IT - Intensive Therapy The last two levels may involve making a referral for sexuality counseling.

22. Models of Inclusion:BETTER Model • B- Bringing up the topic. • E - Explaining that sexuality is part of quality of life & that patients can talk about this. • T - Tell the patient that appropriate resources will be found to address concerns. • T - Timing; if not appropriate now, can ask for information later. • E - Education about sexual side effects of treatments • R - Record in patient chart

24. Examples of Practical Suggestions • Lubrication • Sexualize the bedroom that has become medicalized… • Cover drugs with a towel. • Fatigue: nap before intercourse, schedule sex in the morning. • Sex furniture. • Alternative positions. • Positive affirmation by partner.

25. Suggestions (cont’d) • Skin sensitivity: silk sheets • Emphasis on strengthening intimacy & keeping an open mind about ways to feel sexual pleasure.

26. “Your intimacy and sexual needs are uniquely yours, and it’s important to do what feels right to you, without feeling pressured by anyone else’s timeline or expectations.” ~Melanie Davis Sexuality Educator and President, Honest Exchange LLC

27. References • American Cancer Society, “Sexuality for the Woman with Cancer,” http://www.cancer.org/docroot/MIT/MIT_7_1x_SexualityforWomenandTheirPartners.asp • National Cancer Institute, “Sexuality and Reproductive Issues,” http://www.cancer.gov/cancertopics/pdq/supportivecare/sexuality/Patient/page1 • Cancerbackup, “Cancer & Sexuality” (UK resource): http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Relationshipscommunication/Sexuality/Sexuality.aspx • Akkerman D & Hordern A, “Sexuality and Breast Cancer- Addressing the taboo subject,” International Cancer Information Service Group, http://www.icisg.org/start_publications.htm

28. References • US News & World Report Library, “Cancer and Sexuality,” http://health.usnews.com/articles/health/cancer/2009/06/01/cancer-and-sexuality.html • Katz, A (2005), “The Sounds of Silence: Sexuality Information for Cancer Patients,”Journal of Clinical Oncology, 23 (1): 238-241 • Krebs, L (2006), “What should I say? Talking with patients about sexuality issues.” Clinical Journal of Oncology Nursing, 10: 313-315. • Leukemia and Lymphoma Society, “Sexuality and Intimacy,” 2009, www.lls.org/attachments/National/br_1208892732.pdf • Melanie Davis, http://honestexchange.com/