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Let's Talk About How Cancer Affects Your Sex Life

04/09/2014 12:48 EDT | Updated 06/09/2014 05:59 EDT

Catherine Brunelle figured she knew all about the side effects of her cancer therapy when she was handed a sheet listing them during her treatment for breast cancer. But one thing the sheet did not cover was possible changes in intimacy and sex. Now, Brunelle is part of a Canadian cancer and intimacy website called www.facingcancer.ca, a project that she hopes will expand the much-needed conversation about this taboo subject.

"I had five months of chemo and it was a struggle to connect with my husband on a physical level," says the 31-year-old Ottawa woman who began her own blog, Bumpyboobs, a few years ago after her own diagnosis in order to explore the subject of intimacy, sex and cancer for herself. " I felt so sick and was so exhausted and I just became less interested." The fatigue and nausea from treatment is something she knew about -- the changes to her sex drive and body image, not so much.

It's not an unusual story.

Many women (and men) admit that intimacy after a cancer diagnosis is one topic that hasn't gained much awareness in the current sea of stories about coping with cancer. Yet sexual dysfunction affects up to 90 per cent of women treated for breast cancer; 79 per cent of spouses and partners of women with cancer said that sex and intimacy either lessened for them or stopped altogether. According to the Canadian Cosmetic, Toiletry and Fragrance Association Foundation who commissioned a survey on the subject and who have launched the above-mentioned website, both health care practitioners and patients are hesitant to discuss the effects of cancer treatment on a woman's sex life.

To be fair, Brunelle's oncologist told her she could ask if she had any issues with intimacy. But at the time that he asked, she had no idea what kind of changes he was talking about. Eventually, she found problems regarding her sex drive, dryness accompanied by pain and difficulty with orgasm. "The oncologist's office is an awkward place to talk about sex. From what I have learned, the time we talk about this is when we can do so with other women."

The topic is beginning to crop up on cancer websites round the world. Sexuality and cancer, now a category on the Canadian Cancer Society's website at www.cancer.ca, is a sex ed course for cancer survivors that covers everything from understanding sexual response to myths about cancer and sex (no, having sex does not cause cancer to grow faster or return; nor is it contagious.) The American Cancer Society's website at www.cancer.org discusses everything from communication to premature menopause.

But blogs like Brunelle's Bumpyboobs.com (also featured on www.facingcancer.ca) actually talk about "the things we don't say" like how, after chemo, sex drive evaporated for her and "lady parts tightened to the point of impossibility." Further anti-estrogen drug treatment meant "a lack of lady hormones" which signalled for Brunelle that "sex will never be easy again. Thank God for whipped body butter!"

Facingcancer.ca is a kind of online psychosocial support group for women and it aims to be "for everything else you're going through with cancer." This includes several forums on subjects like sexuality, relationships, family, friends and children and work. It also features several other bloggers, including clinical social worker Lisa Skelding whose Oakville, Ontario counselling service specializes in sexual and couples therapy.

Skelding explains that intimacy doesn't always have to mean sex -- though sex after cancer can be normal indeed. But women undergoing cancer treatment feel anxious about their sexuality, she says. She adds that lack of communication is often the heart of the issue. Feeling of loss have to be talked about: "If the physical changes brought about by treatment are not discussed, both partners can end up feeling disconnected when what they really want is to feel close again."

"Conversation is so important when it comes to cancer," says Catherine Brunelle who told me she has heard heartbreaking stories from women who no longer wanted to have sex or whose husbands stopped touching them. "A lot of women still carry the shame whether about body image or pain." Brunelle eventually worked out what worked for her and her husband, but it's been a journey.

"When you are first diagnosed, it's just the scariest time and you want to do everything you can to fix it."

The last thing on your mind is the treatment's possible effects on sex: " It's only when you start treatment that you learn what are the repercussions of it for better or worse. But it's all extremely hard. They can give you a sheet with possible side effects, but it doesn't really prepare you."

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