When asked, survivors express interest in learning how to find pleasure again in sex. If they're fortunate, they may find sympathetic oncology nurses, psychologists or social workers, some of whom lead self-help groups.
Stewart calls sexuality "the elephant in the room" at her group meetings, but says humor is an easy way to approach it. At one retreat, she opened the sex discussion with an article in which Debra Jarvis, a chaplain at Seattle Cancer Care Alliance, described her adventure buying "marital aids" at a Seattle sex toy shop after being advised they could help her gradually stretch vaginal tissues shrunk during her surgery and chemotherapy.
The 2009 piece in Cure magazine painted the absurd picture of a mature woman being guided by a "sweet, 20-something girl with pierced eyebrows" through shelves of lubricants and colored vibrators to help her and her husband recover their previously satisfying sex life.
In rare places, such as at the Dana-Farber Cancer Institute in Boston, patients and survivors can see a Sexual Health Program therapist who's available to listen, validate their feelings and offer steps to help them adjust to what's commonly called "the new normal" for their changed bodies and psyches. But looking across the country, these oases of help remain scarce.
In December, Dr. Stacy Tessler Lindau, an associate professor of obstetrics and gynecology, and colleagues at the University of Chicago Medical Center published a study in the online edition of the journal Cancer that found -- at least among 261 survivors of breast and gynecological cancers -- that doctors weren't paying attention to cancer survivors' sexual concerns.
Only 7 percent of the survey respondents seen in a University of Chicago gynecologic oncology department recently had sought medical help about sexual issues, although 41.6 percent described themselves as interested or somewhat interested in having the issues addressed. The survey was designed to assess interest in what's now the Program in Integrative Sexual Medicine (PRISM), which Lindau directs.
Leslie R. Schover, a clinical psychologist and behavioral science professor at the University of Texas M.D. Anderson Cancer Center in Houston, says doctors rarely ask cancer patients about sexual effects of the disease or intensive treatments such as chemotherapy, which impair sexual functioning of women with many malignancies, including breast cancer, Hodgkin's disease and leukemia.
Schover, a 30-year veteran of the field, said she shifted her focus from one-on-one counseling toward research into better ways to provide cancer patients with counseling and assessments.
Most recently, she has been exploring how to use the Internet "to create interventions that would be there when people need them, and have accurate information, and include other survivors' experiences on video," along with suggestions on remedies for vaginal dryness and improving sexual communication. She also hopes to make use of social media to help women share stories.
She has created a manual for the front-line nurses and oncology social workers who typically counsel patients who bring up sexual problems. She's also in the fourth year of a National Cancer Institute small business grant to develop a prototype Web site that offers women self-help techniques.