Sex and the Female Cancer Survivor

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Stacey Sandbo and Stacy Lindau counsel a patient at the PRISM clinic. (Photo by David Christopher)

By Dianna Douglas

If your oncologist is worried about your sex life, you’re probably a man.

Stacy Lindau, associate professor of obstetrics/gynecology and geriatrics, has been researching how often women get help for sexual problems after surviving cancer, and the data are grim. Almost none of the women in her study got treatment, and half of them said they wanted it.

Breast or gynecologic cancer is rough on a woman’s sexuality. It often means hormone treatments, chemotherapy, or surgical disfigurations. Cancer could take a breast, the ovaries, or most of the reproductive tract.

Typical results: severe pain during sex, dryness, and difficulty with arousal and orgasm. A mastectomy or hysterectomy will often leave scars that make a woman feel less feminine and attractive. Add that to frequent bladder infections or incontinence after sex, and women find they’re facing some complex problems in bed after cancer. Sometimes the problems persist for years.

Despite abundant research about the negative effects of breast and gynecologic cancers on a woman’s sexuality, a 2002 survey found that physicians generally do not discuss it with their patients. This is in stark contrast to prostate cancer, Lindau said, where men and their doctors talk early and often about preserving sexual function. The dialogue usually begins as soon as a man is diagnosed with prostate cancer, and continues through treatment and beyond.

Lindau, who made national headlines in 2007 by telling Americans about the active sex lives of senior citizens, surveyed hundreds of survivors of breast and gynecological cancer for a study published in Cancer. She asked them who wanted a physician’s advice for sexual problems. Forty-eight percent of young cancer survivors said they did. Interest peaked in women between 48 and 55 – over 52 percent.

It dropped to a fifth among the women over 65. Still, that’s a lot of older women wishing a physician would explain to them why their sex life stalled after cancer and how to get their groove back.

So if women want this help from their physician, why aren’t they asking for it?

One reason is that patients overwhelmingly prefer for their doctor to initiate the discussion. That, however, is a can of worms that physicians won’t open without somewhere to refer their patients for treatment.

“There are few clinics in the United States with the expertise to treat sexual problems in women and girls with cancer,” Lindau said. The University of Chicago has the only one in Illinois, and one of few in the country – the PRISM clinic (Program in Integrative Sexual Medicine for Women and Girls with Cancer).

Another reason lies in the 7 percent of the women who did ask their physicians for help with their sexual issues : they were generally dissatisfied with the result. Without proper training on how to handle a woman’s complex sexual issues after cancer, a physician might suggest a surface-level fix, such as a lubricant. Or, the ultimate romance killer – remind her that she’s lucky to be alive and tell her not to worry about sex.

With nearly six million women cancer survivors in the U.S. this Valentine’s Day, Lindau believes it’s high time for patients and physicians to talk. Lindau started the PRISM clinic with gynecologists, psychologists, oncologists, physical therapists, and nurses. They hope to document how to best treat women with sexual issues after cancer. They are also working with physicians around the country to create more clinics like it.

Lindau told Dr. Laura Berman on Oprah Radio that many women have problems with sex after cancer and believe it’s all in their head. Women come into the PRISM clinic with depression and strained marriages, and rarely know that their sexual problems are legitimate, physical effects of cancer treatment.

Physicians are obligated, Lindau says, to tell their breast cancer and gynecological cancer patients that sexual problems are coming after treatment. Even if they don’t have the answers, it keeps the women from feeling isolated and weird.

Her research shows the huge gap between the need for care and the actual treatments that are available. Lindau hopes to close that gap. She believes that improving a woman’s sex life after cancer might make her feel even more lucky to be alive.

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