The hidden casualty of cancer: Sex as your patients used to know it

Most providers neglect this critical element of healing — Do you?

When women face the shock of a cancer diagnosis, health care providers seldom warn them that the treatment will change their sex lives forever. Of course, providers can shrug off the silence and attribute it to the pressure of saving women from a life-threatening malady, but some women’s health professionals believe there’s more to it. They say it’s a sign of the pervasive discomfort among health providers in dealing with their patients’ sexual issues. Further, it amounts to a glaring disservice to cancer patients.

Kris Sargent, RN, nurse educator at the Mercy Cancer Center in Cedar Rapids, IA, offers the following example: At a recent oncology nursing conference sponsored by her facility, participants panned a presentation on guiding and assisting women to reclaim their sexual function after cancer treatment. "The evaluations for that session were almost all negative," she says. "A few even said they were offended we would put it on the agenda! And these were nurses."

We owe women a straight story on sex after cancer, insists Margaret Chamberlain Wilmoth, PhD, RN, associate professor in the College of Nursing and Health Professions at the University of North Carolina at Charlotte. "We need to tell them early that sex will be different, and they probably can expect problems," she says. "They should understand that they won’t be able to treat the problems with estrogens."

There are several good reasons for promptly bringing sexuality into conversations with women and their partners. "Women often tell me they want to survive, and everything else takes a back seat. But we have got to go beyond survival," says Robert Cowgill, MD, an Atlanta-based surgical oncologist in private practice. "We have to make some decisions on the quality of life after survival, and sex affects the quality of our lives."

For Cowgill, a specialist in breast surgery, the woman’s sexuality is a crucial determinant in surgical choices. "Our charts indicate that the five-year survival rates for breast removal or reconstruction are the same, but the implications for sexuality are legion," he says.

For instance, if nipple stimulation is vital to a woman’s sexual pleasure, she needs to understand that she might not have to give that up. Cowgill explains that it is now possible to transplant excess abdominal tissue to the chest wall so the woman comes out with a breast that’s sensate instead of numb. "It’s a one-stop route to a wonderful-looking breast reconstruction and a brand new flat belly. And insurance pays for it! But we have to talk with women and get them to discuss the options with their partners before we make those treatment plans."

Although surgery has come a long way, he would be the last to assure his patients that everything will switch right back to normal when treatment ends.

Leslie R. Schover, PhD, staff psychologist in the Department of Urology at the Cleveland Clinic Foundation, confirms Cowgill’s position. She says chemotherapy changes sexual experience as much or more than surgery. In a recent study, she found that chemotherapy for breast cancer positively or negatively altered the quality of sexual relationships for 67% of the subjects.1 Cervical, ovarian, and uterine cancers also bring profound changes.

"Sometimes we see increased libido as an overcompensation for the sexual problems, but usually libido drops dramatically," says Vicki Lucas, RNC, PhD, director of women’s and children’s services at Memorial Health Care System in Houston.

Schover, author of Sexuality and Fertility after Cancer (John Wiley and Sons, New York City), says, "It would be nice if it were just hormones, but it’s more complex."

The drop in estrogen from chemotherapy brings premature menopause with symptoms of vaginal dryness, diminished desire, and less ability to reach orgasm. Other effects include nausea and fatigue. Hair loss and paleness mar a woman’s appearance. Also, Schover notes, some women encounter a permanent weight gain.

In general, cancer assaults a woman’s body and mind, unbalancing her sense of who she is as a person. Sexuality is part of that. Changes in body image raise questions of whether she’ll be attractive, loveable, and desirable, Lucas says.

"It’s more than the ‘plumbing issue’ [changes in sexual organs]; women are afraid of losing their partners’ love and interest," she says. "It doesn’t matter whether the relationship is heterosexual or homosexual, the fears are virtually the same: What’s this going to mean for our relationship?"

Airing concerns with a health provider opens opportunities for reality checks with experiences of others who already have made the journey to healing. Sometimes there’s a belief that cancer is contagious through sexual contact, Schover explains, and many cancer patients are scared the stress of treatment will drive their mates away. "But it’s a greater fear to the woman than to her partner," she points out. "There’s no rise in divorce rates after surgery. Often partners feel closer after cancer."

Go gently when you introduce the subject of sexuality, Lucas says. "Remember, a woman’s sexual concerns might be wrapped up in her worry about the problems her illness will cause for her partner."

These questions illustrate how she might steer a conversation from general matters to specifics:

• Have your loved ones expressed concerns or reactions that you’d like to ask me about?

• How is your partner feeling about your body since your diagnosis?

• Do you still hold and hug each other?

• Do think your partner has issues about your sex life that need to be discussed?

• Would it be helpful if I talk with your partner alone or with you as a couple?

Lucas repeatedly assures each woman that she’s still the same person with the same needs as before the diagnosis.

The ideal time to introduce the topic of sexuality is early in treatment, but it’s only a beginning, says Darleen MacAaron, MN, ARNP, women’s health care nurse practitioner at Highline Midwifery and Women’s Health Center in Tukwila, WA. "I think all women need to address these concerns before and, for sure, after any surgery." To invite discussion, she asks questions such as, "Sometimes after surgery, people struggle with feeling sexy. Do you have any concerns about this?"

In most cases, Wilmoth explains, the reality of chemotherapy-induced menopause sets in after chemotherapy is over, about six months post- diagnosis. "As nurses," she says, "we are the best ones to listen and validate women’s sexual problems at that point, instead of sending them through the revolving doors of referrals to doctors and other professionals. We can give them permission to look for different ways to enjoy sex. Maybe we can help them and their partners find alternatives to intercourse while they heal from surgery. They might have to try a lot of different things. Vibrators can work wonders, and we can help them see they’re not being perverted or weird if they try something new."

She relies on the American Cancer Society’s patient education booklet, Sexuality and Cancer for the Woman who has Cancer and her Partner for sound advice on enjoying sex after cancer treatment. (For ordering details, see box, p. 122.)

Lucas encourages her patients to experiment with different positions if the old ways cause pain. Vaginal lubricants substitute for the body’s natural moisture. Lucas suggests vitamin E supplements to rebuild vaginal tissue.

"We shouldn’t assume that intercourse is the peak of sexual experience for everyone," she says, adding that some women have better orgasms with masturbation. "We have to be ready to unconditionally accept what women tell us about their sexual needs."

"When women sign up for my research studies, they tell me one of their greatest frustrations is not finding a health provider who will sit and listen to their sexual problems.2 That’s something we should be doing," Wilmoth otes. "It’s part of helping our patients learn to live with chronic illness and chronic sexual problems."

References

1. Schover LR, Yetman RJ, Tuason IJ, et al. Partial mastectomy and breast reconstruction: A comparison of their effects on psychosocial adjustment, body image, and sexuality. Cancer 1995; 75:54-64.

2. Wilmoth MC, Ross JA. Women’s perception: Breast cancer treatment and sexuality. Cancer Practice 1997; 5(6).