Elissa Thorner Bantug always was precocious, entering Georgetown at 16, graduating at 20 and soon juggling graduate school, motherhood and a job at the National Institutes of Health.
But when she was 21 and asked doctor after doctor if the lump in her breast could be cancer, all balked and said she was too young. Diagnosed with an aggressive tumor at 23, she suffered a recurrence that led to a double mastectomy at 25.
When she should have been enjoying her sexual peak, she was instead taking the estrogen-blocking drug tamoxifen, which slammed the door on her libido and made her cringe at her boyfriend's touch.
Doctors brushed off her complaints about the medication's sexual side effects. "I would say to them, 'Tamoxifen makes me have no sex drive. Tamoxifen makes me unable to climax,'" said Bantug, who has a master's degree in public health. "I would sit there with these middle-aged male doctors who would say, 'I don't think you realize how serious what we're dealing with is.'
"I would say, 'I don't think you realize how important a good quality of life is.'"
Ultimately, Bantug worked through the sexual issues, rekindled her intimate life and now coordinates the Breast Cancer Survivorship Program at the Johns Hopkins School of Medicine in Baltimore.
Her experience illustrates an unfortunate way in which modern medicine fails women with cancer. Specialists and primary-care doctors have become so focused on saving or extending life that they give short shrift to the quality of that life; even as cancer patients say healthy sexuality is not only essential to their well-being but provides vital affirmation that they're still alive.
"If I begin to think I'm less than whole, there's nothing like having good sex with your husband to say, 'I'm still alive. I can do it,'" said Deb Stewart, a nurse navigator at the Johns Hopkins Avon Foundation Breast Center.
Stewart, diagnosed with breast cancer at 25 and again at 47, long ago shed her reticence about discussing private activities within the bedroom; hers or a patient's.
Bantug and Stewart are among survivors working within cancer centers to bring attention to the effect of the disease and treatments on women's sexuality.
"My whole treatment team really was not comfortable talking with me about sex and sexuality, as if it was trivial to even waste their time with it," Bantug said in an interview this week.
Although the field remains fledgling, experts know that during and after treatment, patients frequently have less energy for sexual activity, lose sexual desire and have difficulty reaching orgasm.
Surgical removal of ovaries or estrogen-blocking medications can push a woman into sudden menopause, creating vaginal dryness and atrophy, and changes in her skin and hair, all of which may make her feel less sexy and confident about her body. Pelvic radiation treatments for rectal, cervical or bladder cancer can damage estrogen-producing ovaries, shrink and scar delicate vaginal tissues and make intercourse painful.
Radiation to the upper body can burn the skin, scar the breasts and transform even a delicate caress into torture. Chemotherapy can cause permanent nerve damage.
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.