The scarcity of attention to sexual side effects stems from the dearth of professionals who know much about them. Oncologists haven't been trained specifically to address sexuality, leaving them wondering what to tell their inquiring patients.
Some cancer specialists have told patients just to be grateful for surviving. Many patients assume gynecologists are the experts in sexual problems "but most gynecologists do not get a lot of training in pain, or menopause-related problems," Schover said.
Finally, she said,. many women mistakenly assume that if a doctor hasn't mentioned anything about sexual effects, "maybe this is just trivial. Maybe I'm the only one who has it."
As newer classes of drugs have been shown effective in prolonging cancer patients' lives, more also has become known about their potential to cause sexual side effects that can cause distress in relationships.
"One of the things we're seeing right now is women who are getting aromatase inhibitors for breast cancer have horrendous vaginal dryness," Schover said.
The severe atrophy is harder to treat with some of the simple measures she often suggests, such as vaginal moisturizers or estrogen creams.
Medications in the research pipeline may some day offer relief from problems that can make sex painful rather than pleasurable. Among them is lasofoxifene (Fablyn), a third-generation selective estrogen receptor modulator (SERM), designed originally for osteoporosis, developed by Pfizer and available in Europe.
In clinical trials, it improved vaginal atrophy by relieving pain and dryness without increasing risks for uterine cancer or breast cancer. But the Food and Drug Administration remains concerned about increased risks of blood clots. Another experimental SERM being tested for vaginal atrophy is Ospemifene (Ophena), which QuatRx Pharmaceuticals of Ann Arbor, Mich., last year licensed to the Japanese company Shinogi Inc.
In the meantime, professionals advise trying techniques to improve vaginal dryness and tightness based on anecdotal experience, rather than scientific evidence. For example, doctors often advise patients to have sex several times a week, or use vaginal dilators to stretch vaginal tissues, even though "no one knows whether those are protective or not," Schover said.
"Frankly, no one has ever done the research."
She has advised some women to try using dilators to recognize when they're tensing pelvic muscles and then consciously try to relax those muscles. That kind of practice in private -- or with a partner as part of sex play -- can be "kind of an intermediate step to getting comfortable," she said.
Ultimately, sexuality needs to be incorporated into the growing attention to cancer survivorship, says Lillie Shockney, the nurse who serves as administrative director of the Johns Hopkins Avon Foundation Breast Center in Baltimore. "When treatment ends, we just can't say to a patient, 'You're done, now go to your family doctor.' Patients are dealing with long-term side effects, they're dealing with fear of cancer coming back."
A woman should learn to speak up when physicians or nurses asks how she's doing. "If she doesn't speak up and say, 'Everything is going OK, but I'm still dealing with sexual dysfunction issues that are really ruining my quality of life,' then it's a missed opportunity to get an open discussion and symptom relief," Shockney said.