Sex and Intimacy After Cancer

In 2005, chemotherapy for stage 2B breast cancer threw Cathy Nilon into menopause at 43. Nilon’s menstrual cycle stopped during chemo, and because her cancer was estrogen receptor-positive, she chose to have a complete hysterectomy in which her uterus, cervix, and ovaries were removed.

Nilon, a children’s book illustrator in Seattle, still struggles with the resulting sexual dysfunction, including low libido and severe vaginal dryness. She didn’t ask for help until a year after treatment ended. “I wanted to take it slow, and my husband was very patient with me,” she says. “I kind of was just leveling out to try to see how life was going to be without hormones, without estrogen, without my ovaries.”

Sexual dysfunction following cancer treatment can be both physical and psychological. Hormonal therapy, chemotherapy, and surgery or radiation in the pelvic area can be a physical cause of erectile dysfunction for men and vaginal dryness and pain for women. Negative body image, performance anxiety, and depression can also lead to or worsen sexual dysfunction.

“Lots of times it’s a combination where there’s some real physical element to what’s happening, but then very quickly it’s exacerbated by a performance anxiety, shame, embarrassment,” says Sharon Bober, PhD, director of the Sexual Health Program at Dana-Farber Cancer Institute in Boston.

Studies suggest anywhere from 40 percent to 100 percent of cancer survivors—most of the research has been done in women with breast or gynecologic cancers and men with prostate cancer—experience sexual dysfunction, but it is seldom brought up by health care professionals.

Not in the Mood

Low libido, or loss of desire for sex, may be a direct side effect of cancer treatment or supportive care drugs, such as opioids for pain or antidepressants. But loss of libido may also result from anxiety and frustration.

“I like to think of libido as a recipe with many ingredients,” Bober says. She emphasizes figuring out the “ingredients” and then working from there. She says that pain or fatigue is often the first thing that leads to not feeling “in the mood.” Feelings of guilt and worries about a partner’s needs and satisfaction become the elephant in the room, she says. “Nobody wants to talk about it. It becomes a self-propelling problem, in that, the longer time goes by, people then also become kind of less connected with that part of themselves,” Bober says.

Bober suggests survivors take baby steps to get used to being touched again such as solo touching, massage, or taking a bath with their partner. This can lead to partners exploring each others’ bodies together to determine what feels good as they indulge in fantasy or other mutually stimulating activities.

Barbara Rabinowitz, PhD, LCSW, RN, a certified sex therapist practicing in Southport, North Carolina, and founder of the National Consortium of Breast Centers, suggests survivors and their partners read together about sexual recovery. “It may help them feel more comfortable talking with each other. It may also give them some ideas about some things they want to try out together.”

Rabbi Ed Weinsberg suffered low libido and erectile dysfunction for nine months after hormonal therapy with Lupron (leuprolide) followed by a radical prostatectomy for prostate cancer in 2007. But after two years of a low PSA score, his doctor decided it was safe to prescribe a synthetic testosterone replacement that Weinsberg says did “wonders” for him.

Sharon Bober

"Nobody wants to talk about it. It becomes a self-propelling problem, in that, the longer time goes by, people then also become kind of less connected with that part of themselves."

“I’ve been on it for close to a year and it’s made a difference not only in raising libido but in eliminating body flab and loss of energy, which happens when your testosterone drops,” he says. But hormone levels are unique to each person and may only be part of the issue, which is why a psychological assessment is recommended before hormone treatment.

Weinsberg also advocates “faith and fitness” to improve sexual function, suggesting that survivors not only need faith that the side effects may not be permanent but also personal resilience and ability to adapt. He adds that exercise promotes blood circulation, including in the genitals, and produces endorphins, which may help with mood and depression.

Navigating Intimacy

In addition to low libido, women may also experience vaginal dryness and pain. Eliminating estrogen leads to decreased vaginal lubrication and vaginal atrophy, resulting in dryness, pain, and possible vaginal tearing during sex. Vaginal moisturizers applied two to three times a week plus the use of non-medicated lubricants during sex may help. Rabinowitz recommends a woman’s partner apply the lubricant and that they incorporate it as a part of their love-making.

Nilon’s oncologist prescribed Estring, a silicone ring inserted into the vagina that slowly releases a low dose of estrogen over three months, but she stopped because of vaginal discomfort, a possible side effect. Her oncologist then recommended Vagifem, a type of vaginal estrogen in the form of small tablets that stick to the vaginal wall. Nilon says Vagifem works well for her. “It offers some slow-release moisture and plumps up the tissue a little bit and makes it less dry and therefore less painful,” Nilon says.

Since vaginal estrogens do enter the bloodstream, prescribing estrogen in any form or dose to breast cancer survivors remains controversial. Despite the choice by some oncologists to prescribe vaginal estrogen to women with a breast cancer history, Rabinowitz calls it a “wait-and-see” issue among her colleagues.

Other options for vaginal dryness and pain during intercourse include the use of dilators to increase the size of the vagina (especially after pelvic radiation or surgery) and learning to control the muscles around the vaginal entrance with Kegel exercises to better relax them during intercourse. Kegel exercises involve tightening the vaginal muscles—the same muscles used to stop the flow of urine—for three seconds and then releasing. Experimenting with different sexual positions that put less pressure on painful areas may also be helpful.

Erectile Dysfunction

There are numerous remedies for erectile dysfunction, the most common sexual problem for which men seek help after cancer.

Three Food and Drug Administration-approved oral medications—Viagra (sildenafil), Cialis (tadalafil), and Levitra (vardenafil)—work by increasing blood flow into the penile tissue, and are successful in up to 70 percent of patients, except for those receiving androgen deprivation therapy and those with nerve damage.

Men can also inject drugs directly into the penis, or insert them through the urethra using a medicated urethral system for erection (MUSE). Possible side effects of MUSE can include pain and prolonged erection.

Penile vacuum devices use a cylinder and vacuum pump to create suction around the penis to bring blood and an erection, but may cause slight penile numbness or bruising. Penile implant devices, or prostheses, serve as the most invasive, permanent option, requiring surgery for placement. According to the National Cancer Institute, patients report higher rates of long-term satisfaction with penile prosthesis surgery compared with other therapies.

Intimacy Without Intercourse

When sexual intercourse isn’t feasible, survivors and their partners can still enjoy sexual intimacy and orgasms without penetration using alternatives such as foreplay, mutual masturbation, and sensate focus—exercises of noncoital pleasuring that help people rediscover what feels good.

The first thing to do is get the focus off the sex act and on feeling, sensation, and pleasure, says Dana-Farber’s Bober. “A lot of times we’re still talking about a sense of self-discovery. This is where things like self-touch or using a vibrator can be very helpful, not just for restoring blood flow to tissue, but also for being able to figure out what feels good.”

Nilon says she and her husband use vibrators and lubrication to ease her pain. They have also found that massage offers a great deal of intimacy and pleasure. “Massages can be a great way to give each other moisture, intimacy, touch, everything,” she says. “It’s almost orgasmic even without having sex. We go for quality over quantity, too.”