Few women seek help for sexual issues after cancer treatment, but many want it

"Some women have the courage to raise sexual concerns with their doctor, although repeated studies show they prefer the doctor to initiate the discussion," said Stacy Tessler Lindau, MD, associate professor of obstetrics and gynecology at the University of Chicago Medical Center and senior author of the study. "Physicians will often empathize with a patient's concerns, but struggle with a lack of knowledge about how to help."

Sexual problems in women after treatment for gynecological and breast cancers are well-documented -- pain, dryness, loss of desire, difficulty with arousal and orgasm, and changes in body appearance due to treatments. Cancer survivors often struggle with body-image concerns, and don't feel attractive or feminine after treatment.

Doctors rarely talk with women about the impact of cancer on their sexuality. "There are few centers in the United States with the expertise to treat sexual problems in women and girls with cancer," Lindau said. Many women also don't discuss the issues with their spouse or partner.

The researchers surveyed 261 gynecologic and breast cancer patients and collected their medical records data. The mean age of the participants was 55, with a range of 21 to 88 years. Only seven percent of the patients surveyed had asked for advice or medical help for sexuality problems, but 42 percent were interested in receiving such care.

"Anything that affects the female sexual organs will have repercussions on body image and on a woman's sex life," said Emily Hill, MD, a fourth year resident in obstetrics and gynecology at the University of Chicago Medical Center, and lead author of the study.

The results of this study demonstrate a large, unmet need for attention to the sexual concerns of women who survive gynecologic and breast cancers.

"A lot of the treatments have effects on sexual health," Hill said, including hormone therapy and chemotherapy. "We see impact after many kinds of breast cancers or gynecological cancers."

Women who had been out of cancer treatments for more than a year were significantly more likely to want medical care for sexual concerns than women who were currently in treatment. Thirty-two percent of the women in treatment wanted to talk about sexual issues, while 47 percent of the women who were more than twelve months out from their last cancer treatment wanted medical care for sexual concerns.

Younger women were more concerned about sexual issues than older women. However, more than 22 percent of women over 65 in the study also said they wanted medical care for their sexual issues.

A woman's sexuality is affected by both physical and psychological issues after cancer treatments, Lindau said. "It is critical that physicians caring for cancer patients know that sexual concerns are often physical. The physical problems associated with cancer treatment can strain relationships, cause worry and stress, and can be very isolating -- many women come to us feeling ashamed, guilty, or alone. They feel like the problem is primarily in their head."

In the treatment of prostate cancer, by contrast, many physicians routinely address concerns about sexual function. Preservation of sexual function is a topic that is proactively addressed with men before a treatment decision is made and continues openly throughout prostate cancer care in many centers, Lindau said.

Lindau is director of the Program in Integrative Sexual Medicine for Women and Girls with Cancer -- the PRISM clinic at the University of Chicago. It was started in 2008 to address and study women's sexual problems. With specialists in gynecology, psychology, physical therapy oncology, and nursing, it is one of few clinics nationwide that comprehensively addresses female sexual concerns caused by cancer. Lindau and her colleagues are establishing a field of research with other cancer centers across the country to generate evidence about how best to treat the sexual problems that women experience after cancer.

Thirty-five percent of the women surveyed were willing to be contacted if a formal program to address sexual issues after cancer were offered to them. The PRISM Clinic is the only place in Illinois that offers such a program. Lindau is working with other physicians in Illinois and around the country to help build similar programs and develop best practices.

The research was funded by a grant from the National Institute on Aging at the U.S. National Institutes of Health, and by the University of Chicago Comprehensive Cancer Center.