The double mastectomy took her breasts and the cancer they contained. Elissa Bantug was just 25. She was used to a satisfying, uncomplicated sex life with her live-in boyfriend, and she craved that intimacy as she looked ahead to her post-cancer life.
Three days after the surgery, "grabbing at straws and wanting to feel normal," she gave her boyfriend, AJ, the come-hither look that had always worked in the past. This time, however, he balked, afraid of hurting her.
"We had a huge fight," recalled Bantug, now 33. Though she is now married to AJ and living in Columbia with their children, finding their way back to intimacy was a struggle. Both of them had to get used to Bantug's new body — to her reconstructed breasts that were no longer sensitive, and the fact that cancer treatments had changed the way she responded in bed.
Bantug could not find anybody to help her, or even agree with her that there was a problem.
She reached out to her oncologist and her gynecologist, but both brushed off her concerns. "The attitude was, 'You should be glad to be alive,' " said Bantug. "I have to say, my doctors did a very good job of removing disease, but not such a good job of making me well."
The experience inspired her to help others. Bantug was working toward a graduate degree in public health at the Johns Hopkins University while undergoing treatment. In 2008, she joined Hopkins to help create a new Breast Cancer Survivorship Program at the Sidney Kimmel Comprehensive Cancer Center. She now helms day-to-day activities of the program, under the leadership of oncologist Dr. Antonio Wolff.
The Survivorship Program helps women navigate and thrive in their post-cancer lives, with guidance from a team that includes oncologists, researchers, nurses, navigators, physical therapists, social workers and other survivors. Sexual health is central to that mission.
"Helping breast cancer survivors enjoy satisfying sex lives is so important," said Bantug. "Providers here really want to make sure patients are not just cancer-free but are thriving after cancer."
Bantug works closely with Julie Everett, a Hopkins physical therapist specializing in treatment of the pelvic floor, the area of the body that supports sexual organs, the bladder and rectum. According to Everett, 64 percent of women fighting breast cancer experience intimacy problems during treatment, and 45 percent say their sex lives continue to suffer after the treatment ends. Sexual problems include lack of desire, pain during intercourse, inability to climax, fertility issues and vaginal dryness.
Unlike other side effects of cancer drugs and surgeries, sexual issues often don't get better on their own in a year or two, and could get worse without intervention, according to the National Cancer Institute.
Yet many women are reluctant to ask for help, and many doctors don't offer it, said Everett. To change that, she has been giving presentations to caregivers during the weekly Breast Cancer Tumor Board meetings, where clinicians get together to discuss cases. Communication is key, Everett told about 20 caregivers recently. Ask patients if they are experiencing sexual difficulties. Even if the patients say no, follow up at every visit, she urged.
Both patients and doctors may be reluctant to discuss sexual concerns, she said. Patients may be embarrassed, or may believe the problems can't be fixed, so there is no reason to try. They may think they're not supposed to want sex. Doctors may worry about putting patients on the spot, or they may avoid the issue because they are not experts in sexual dysfunction.
"I tell doctors you don't have to fix the problem, but you have to facilitate a solution," Everett said. That could mean simply giving patients a list of resources, including primary physicians, physical therapists, gynecologists and sex therapists who can help.
Psychologists or therapists can help couples grapple with the emotional issues of intimacy after cancer. Sometimes general practitioners or gynecologists will recommend medications to ease dryness and pain during intercourse, being careful to make sure the medications are compatible with cancer drugs such as tamoxifen.
Everett, who joined Hopkins in 2012, sees patients as young as 15 and as old as 97, she says.
Breast reconstruction can change the shape of the pelvic floor, creating tightness where it did not exist before. Chemotherapy and other medications can change a woman's responsiveness. To help women work through these changes, Everett provides external and internal massage, and may recommend specific sexual positions and exercises. She also helps patients who are not ready for intercourse find ways to enjoy intimacy without it.
With two significant gifts, Johns Hopkins is preparing to expand its survivorship services. A July donation of $10 million from Under Armour will create the Under Armour LiveWell Center, with services for cancer survivors including a workout room, nutrition counseling, and space for workshops and presentations.
An additional $1.7 million from the Centers for Disease Control and Prevention will be used to expand services for women under the age of 45 who have breast cancer. Bantug will co-direct the program, alongside oncologist Vered Stearns. Sexual health will be a primary focus, Bantug said.
Women may believe sex is no longer a part of life after surviving breast cancer, but that's not true, said Everett. In fact, a healthy sex life can be an important part of post-cancer recovery and joy."There's a lot of tension," she said, "and making sure that tension has an outlet is very important."