While 74 percent of the women in this study believed that physicians should initiate a discussion about sex, 62 percent of women who had undergone "severe compromise to their reproductive and sexual organs" said their physicians had never brought up the effects of their treatment on sexuality.
Women who had not had such a discussion were three times as likely to suffer from multiple sexual problems at the time of the survey, the researchers report in the August 2007 issue of Gynecologic Oncology.
"We found that these women valued sexuality and participated in sexual relationships and activities at a rate similar to women who had not been through cancer treatment, but they were not adequately prepared for the sexual issues that their cancer or its treatment introduced," said study author Stacy Lindau, MD, assistant professor of obstetrics and gynecology at the University of Chicago.
"Discussions with a physician about sexual consequences of cancer and cancer treatment matter a great deal to many of these patients," Lindau said. "But survivors report that such conversations infrequently occurred. If such discussions are not happening in this context," she said, "we suspect that they are even less likely to occur when the connections between disease or treatment and sexual function are less apparent."
"It seems unbelievable to me," added one cancer survivor who responded to the survey, "that a surgeon would remove one's sexual organs and never talk about sex."
Lindau and colleagues surveyed 219 women who had been treated for a rare form of vaginal or cervical cancer. The women were contacted through the Registry for Research on Hormonal Transplacental Carcinogenesis, established in 1971 by Arthur L. Herbst, MD, professor and former chairman of obstetrics and gynecology at the University of Chicago. The registry tracks the medical history of patients with specific gynecologic cancers who may have been exposed to diethylstilbestrol (DES) or other synthetic hormones while still in their mother's womb.
Most of the women had been treated with surgery or radiation therapy when they were in their late teens or their 20s and had survived after their cancer diagnosis for more than 20 years. Of the 219 women contacted, 162 (74%) returned a completed questionnaire.
The researchers then compared the responses from these women with race- and age-matched controls selected from a 1992 national study on sexual norms.
They found that the cancer survivors--now in their late 40s and 50s--were just as likely as the control group to be married and to be sexually active, despite a remarkably higher prevalence of sexual problems.
They were also four times as likely to have health problems that interfered with sex "all or most of the time" (17% vs. 4%).
Among those who were sexually active, sexual problems in cancer survivors were far more prevalent as compared with the general population. Half of the survivors, versus 15 percent of the control group, reported three or more sexual problems. The cancer survivors were seven times as likely to have pain during intercourse and three times as likely to have difficulty lubricating.
More than one third complained that their treatment, though life-saving, had left them with surgical scars, frequent bladder infections or incontinence after sex that made them feel unattractive.
Those who did report a conversation with a physician about the sexual effects of cancer treatment were three times less likely to have "complex sexual problems" (defined as 3 or more concurrent sexual problems).
Previous studies found that patients typically will not initiate such a conversation. This study showed that although the vast majority of long-term cancer survivors believed physicians ought to initiate such a discussion, the majority of physicians did not do so.
"Strong evidence for the negative impact of medical illness and treatment on sexual functioning exists," the authors note, "but concern for sexual matters remains largely on the margin of medical care, particularly for older women."
"Improved communication with patients about sexuality may help maximize the experience of very long-term survivorship," the authors conclude.
"As a cancer surgeon and one who has treated these patients and studied this disease for many years," said Herbst, founder of the DES registry, "I know how important are the lessons of this study, particularly in terms of our appropriate dealings with these patients. These study findings are new and document a real need."