Yes, You Can Talk About This

When you first get a diagnosis of cancer, you're more worried about surviving than how it will affect your sex life. But as time passes and you begin to get your bearings, it becomes a topic of prime concern for many women, yet one they are very reluctant to bring up with their doctors. To make matters worse, many doctors don't bring it up, either. Clinical psychologist Sally Kydd knows exactly how that feels. "After my surgery (for breast cancer), I wasn't happy with my scarred body, I didn't think it looked nice and it didn't 'work' as well," she says in the forward of her new book, "Intimacy After Cancer: A Woman's Guide," which she wrote with medical writer Dana Rowett. She found herself trying to cope with "the loss of my body as I knew it, the loss of my sense of invulnerability, the loss of who I thought I was, and I was beginning to feel so very mortal ... And into all this mix, I questioned whether I was still desirable to my husband." Having nowhere else to turn, she used her training as a psychologist to seek out the answers she needed, and eventually became an expert on the topic of sexual recovery after cancer. We caught up with Kydd online, just as she was about to board a plane to Tibet. Here are the highlights of our conversation:

NEWSWEEK: After a woman receives a diagnosis of cancer, you say that sexuality is the "elephant in the room." What do you mean?
Sally Kydd: When a woman discusses treatment options for cancer with her doctor, the potential sexual side effects of what the woman will experience are almost never part of the conversation. Sexual issues are definitely there, but hardly ever mentioned: hence, the elephant in the room. Often each woman thinks she [is] alone is experiencing these problems, but these sometimes devastating sexual side effects touch the majority of women treated for cancer.  Most of the women we spoke with expressed the idea that they were now "damaged goods" and were concerned they were no longer desirable or even loveable. No one who goes through cancer comes out unchanged. You are not the same person you were before your diagnosis. Our book is not just about helping a woman to succeed with intimacy and sex.  It is about guiding her to work through who she is now, after cancer, to decide what it is she wants in her intimate relationship, and to encourage her to go for it.

Do you speak from personal experience?
Yes. I had a bilateral mastectomy and reconstruction to remove breast cancer in 2002. My mother died of the disease, so I chose an aggressive treatment to minimize the chance of a recurrence. Only my very special mastectomy surgeon, Dr Robert Cowgill of Atlanta, told me that I would never be able to experience sexual pleasure from my breasts again as they would be permanently numb. No one mentioned the sexual side effects of tamoxifen and other drugs I took, even though I had very caring, sensitive oncologists.

So much of sexuality concerns self-image. Many women are insecure about their physical appearance before their diagnosis. Does the reality of cancer treatments just make that insecurity worse?
Yes. Most of us worry when we gain a few pounds, so imagine looking in the mirror and seeing a jagged scar where your breast was, a scar across your bikini line (mine is 19 inches long) or an ileostomy bag hanging from your side after colon-cancer surgery. Chemotherapy and radiation can cause hair loss and weight gain. It is difficult to feel attractive or even feminine with so many drastic changes happening to your body. Changing your focus and accepting the new, beautiful you allows you to return to feeling like a desirable woman.

Losing a breast is what many breast-cancer survivors deal with. What other physical changes related to cancer treatment can affect a woman's sexuality?
A premenopausal woman often experiences abrupt, severe menopausal symptoms after cancer treatment. The vaginal walls can become tissue-paper thin, which makes them vulnerable to injury, and slow to heal. At any age, the vagina can become as dry as sand paper and may also shrink (especially with pelvic radiation or surgery to remove the uterus or cervix), making sexual contact painful. Add to this severe fatigue, night sweats, hot flashes, weight gain and fluctuating hormones, and sex can be difficult or sometimes impossible to enjoy after cancer treatment.

Many cancer survivors complain that their sex drive just disappears after the diagnosis. Why is that?
Estrogen levels in a woman's body take a nose dive with a hormone-positive cancer, once treatment commences, and this can directly affect a woman's libido. Also, overwhelming fatigue can cause a woman's libido to disappear. Sex for women requires energy and mental focus that is, initially and understandably, focused on overcoming the disease. Physical symptoms such as severe fatigue, night sweats, hot flashes, weight gain, can definitely affect a woman's desire. Intimacy, and feeling loved, however, remains important, and many women want to feel intimate with their partner but not necessarily in the same sexual way as before.