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.
What are the consequences of not talking about these things?
Communication is very important as a woman goes through cancer, whether about intimacy or anything else. Many couples don't talk about sex, but just "do it." Now is the time for the conversation to start. A man may not approach his wife or partner sexually during and after cancer treatment because he is afraid of hurting her or pushing her to become intimate before she is ready. She may misinterpret this lack of approach as rejection of her new body. Misreading your partner's thoughts about your new body can be devastating to your relationship and your self-esteem. Better to have the conversation than to not know what your partner is thinking. The couple may have to rewrite their "sexual script" or the way they make love. If foreplay before cancer included fondling of breasts, but a woman's breasts are now missing or numb, the couple may need to change this aspect of intercourse. They can still enjoy each other intimately, but they need to talk about how to enjoy their intimate times together differently. If a woman doesn't tell her partner what works and what doesn't work now, they will both be miserable and their physical and emotional relationship may fade away.
How does a woman start to fix this problem?
When a woman says she'd "rather read a book," we tell her to "read the right book!" A woman's sexual desire begins in her mind, unlike a man's, and she must purposely begin thinking about lovemaking again. She needs to re-ignite the flame she felt before cancer. She can set the stage with whatever makes her feel romantic and desirable. She can order special lingerie to hide an ostomy bag or scars she may have if this will help her feel special. We offer resource links in our book. She also must communicate with her partner about what feels good and what doesn't, since her cancer treatment. If talking about sex is difficult, she can begin the conversation with a letter. She may choose to explore new erogenous zones on her own first and then let her partner know what works.
Can you give us a few practical solutions to some of the most common complaints?
In short, spontaneity may have to be replaced by some fore-planning!! Couples may need to schedule "dates." Try to schedule some uninterrupted time for intimacy during the day or evening when you are least tired. Even if you and your partner share intimacy without sexual intercourse, the flame is being rekindled, and can reignite that side of your relationship. For the dry, thin vagina: lubricate, lubricate, lubricate! Replens (a vaginal moisturizer) and Astroglide (a lubricant) are good products to try first to help you avoid injury and successfully enjoy pain-free sexual contact. If the vagina is too tight, you may want to try using dilators, which are available online or through your Ob-Gyn. But be sure to ask your doctor first before trying dilators. To keep vaginal tissue healthy, it is imperative that you keep blood flowing to the area. "Use it or lose it" is true. Vaginal stimulation and orgasm are two excellent ways to keep blood flowing to the tissue.
Do you think that eventually, most cancer survivors can get to a better place sexually than they were at the start of their disease?
Absolutely! Many women report their sex lives are better than ever after cancer treatment. But it won't happen automatically. You have to communicate, explore, and be open to rewriting your sexual script. It's a wonderful way to celebrate your life! It's important for each of us who have had cancer to decide to thrive, rather than just survive the disease.
Is the secret to this learning to love yourself so others can love you, too?
Yes, and perhaps it is also about allowing, or inviting, your partner, or future partner if you are single, to love you the way you are now. Accepting the new you, the new way your body functions and looks, and the new outlook on life you have as a result of your cancer experience, can all work together to create a deeper, more intimate relationship. But it takes some effort. Your partner, and others, will likely follow your lead.