When Laura underwent a bone marrow transplant at Brigham and Women's Hospital in 2006 for a rare blood disorder called paroxysmal nocturnal hemoglobinuria (PNH), her focus was on staying alive.
Once she survived the transplant, the 25-year-old found herself facing various physical and emotional side effects that made intimacy with her boyfriend excruciating.
It took visits to several doctors and surgery to diagnose and correct what was physically wrong: graft-versus-host disease in her vaginal area.
But it wasn't until Laura (not her real name) met Dana-Farber clinical psychologist Sharon Bober, PhD, that she recognized she was suffering from post-traumatic stress disorder from her transplant and aftermath and, through counseling and practice, began to reclaim the sensual part of her life.
Bober directs Dana-Farber's new Sexual Health Program, which offers counseling, education, and treatment to help restore sexual functioning among cancer survivors.
The program is part of the Adult Survivorship Program, established to help survivors cope with long-term medical and psychosocial consequences of their disease and treatment.
"Dr. Bober was the one person I could confide in who had ideas for helping me," says Laura, a Boston-area sales manager.
According to experts, at least half of people who survive breast, prostate, colorectal, or gynecologic cancers confront post-treatment sexual difficulties such as loss of desire, pain during intercourse, erectile dysfunction, or infertility.
Survivors of other cancers may face challenges in their sex lives, too, as a result of treatment.
Among the causes are side effects from treatment (chemotherapy, radiation, surgery, or hormonal therapy), depression and anxiety, and an altered body image.
These problems can often be managed with tools and strategies including exercise, medication adjustment, and talking with one's partner or a professional, Bober notes.
However, many people don't know where to turn or how to broach these topics.
"Our culture is saturated with sexual images, but there is little training about how to have honest conversations about real sex," she observes.
"Then you get cancer, and all the effort is focused on getting through treatment and being alive. We don't do a great job of allowing people to acknowledge the loss they've had along the way. You can be incredibly grateful to be alive and still acknowledge that this isn't the same body you had."
Dana-Farber is one of the few cancer centers nationally that offers sexual rehabilitation counseling to survivors, according to Leslie Schover, PhD, an expert in the field from M. D. Anderson Cancer Center in Texas who was a visiting scholar with the Perini Family Survivors' Center at Dana-Farber last year. (The LAF Clinic is part of the Perini center.)
Bober began seeing Dana-Farber patients with sexual dysfunction in 2007, and the Sexual Health Program launched officially last fall with the addition of a team of specialists.
The program is open to all cancer survivors, whether treated at Dana-Farber or elsewhere, and provides individual and couples counseling, referral and follow-up, and education for patients and professionals.
Bober also hopes the program will be a springboard for clinical research to support survivors.
Our bodies naturally change as we age, but these changes are often magnified by the cancer experience. Bober's goal is to help people rediscover their sense of pleasure and sensuality, not necessarily recapture what used to be.
"Going through cancer treatment can make you feel disconnected from your body," she says. "So becoming comfortable in one's body again is an important first step."
Bober sees sexual health as essential for moving forward after cancer: "Sexuality is not just about what we do, but about who we are. It's a very life-affirming part of the human experience."
For more information about the program or to schedule an appointment, call 617-632-4523.
For more information about other programs offered within the Adult Survivorship Program, or to schedule an appointment, please call 617-632-4LAF (4523).
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