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.
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.
She's currently comparing the effectiveness of a 12-week online program for cancer survivors to the online program supplemented by three in-person counseling sessions.
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.
Health professionals need to be trained to give the patient time to bring up sensitive sexual issues. "If we look like we're in a hurry, then that's just a disincentive for her to bring it up," she said.
Shockney, a two-time breast cancer survivor, has no hesitation in sharing stories about cancer and her sexuality if it will make others more comfortable sharing theirs. "I kind of function as the Dr. Ruth of the breast center," she said. "I don't have any problems bringing it up and when I bring it up, people don't have any trouble talking about it."
Sexuality is important, she tells women in her frequent lectures on the subject. "And it shouldn't be ignored because cancer came along and disrupted or interrupted it; derailed it in some cases."
Patients should be aware they have the right to address their sexuality with their health team, and shouldn't "assume that there's nothing we can do about these symptoms." she said.
Such an attitude helped her with a 51-year-old mastectomy patient who'd given up on romance until a former college boyfriend came back into her life during her chemotherapy, as she looked and felt her worst.
When the man asked her out for a long weekend, she called Shockney and revealed she hadn't been sexually active since they'd broken up 30 years earlier. She feared that vaginal changes caused by chemotherapy would stand in the way of sex and romance.
Shockney had to teach her that in the 30 years since she'd last had sex, chemical engineers had developed a space-age lubricant called Astroglide. The patient picked up four bottles, called Shockney from her hotel room for a pep talk, and hours later reported all went well. The two ended up marrying.
Shockney often shares "personal war stories, having traveled this breast-treatment road twice myself and been on hormonal therapies that certainly derailed what we were doing at home."
She admits that she married a gem of a man, a retired tractor-trailer driver with a deeply philosophical side who has long stood by her.
After her first mastectomy, he told her: "Women look at mastectomy surgery as losing an important part of your body. It's transformation surgery. The surgeon's mission is to transform you from a breast-cancer patient to a breast-cancer survivor. You're exchanging your breast for another chance at life and that's a fair trade."
After her second mastectomy operation, he picked her up for a surprise romantic getaway in the Pocono Mountains, saying. "I packed your toothbrush and hairbrush because we're not leaving the room. I read that when you lose one of your senses, like your sense of sight or sense of smell, your other senses become more intensified. Maybe the same thing happens to your erotic zones. My mission is to prove this hypothesis in the next 48 hours."
A nervous Shockney told him she wasn't sure she was prepared for the sexual intimacy so soon after surgery. "He said, 'Look at us. We've been married 14 years. We're just going to see where this takes us."
Those words were enough to allay her fears that losing her second breast might affect their sexual connection.
She often shares the Poconos story with patients, knowing they'll then go home "and tell their partner that story and that then opens up the conversation."
Because at day's end, she said, healthy sexuality depends on good communication.