10.18.11

Sex After Breast Cancer

Millions of women struggle with a consequence of breast cancer that’s rarely discussed: its impact on sex. Debby Herbenick, a sex researcher and educator, on what couples actually face.

Despite the explosion of “pink” awareness, one aspect of breast cancer remains taboo: its impact on a couple’s sex life. Although men are sometimes diagnosed with the disease, it mostly “happens” to women’s breasts, body parts that remain closely connected to sexuality, no matter how messages are spun (“They’re just another body part!” “They provide food for babies!”).

It took decades of work by brave women and men to bring breast cancer into mainstream conversation, media, shopping malls—even football fields. And much of this success can probably be attributed to a strategy that necessitated, in a sex-phobic American culture, that breast cancer be desexualized in order to be discussed in “polite company.” I don’t fault breast-cancer activists for this; it worked. Being able to talk about the disease openly has meant greater visibility, fundraising, and activism, and thus earlier detection and more treatment options—all of which translates into more survivors. There are about 2.5 million breast-cancer survivors living in the U.S. alone.

And yet, to ensure that women not only survive but enjoy happy, healthy, and fulfilling lives, I think it’s about time we bring sex into the conversation. True, sex is now frequently used to provocatively garner attention for the disease, or for laughs (think: Save the Ta-Tas, I Love Bookies, Save Second Base, or Rethink Breast Cancer, with its shirtless men)—but these campaigns hardly count as earnest discussion. Here’s why we need it:

We’re in the dark. Perhaps the most surprising finding about sexuality and breast cancer is this: we know next to nothing about helping breast-cancer patients and survivors overcome sexual difficulties. A recent article in Breast Cancer Research and Treatment was meant to review all the studies on sex-related interventions for breast-cancer treatments. It found only 21 studies that had evaluated interventions for the sexual difficulties of patients and survivors. Only 21!

Sex is rarely ‘just sex’—it’s also about connecting after going through a major trauma.

And yet I wasn’t shocked: when my research team conducted a study on young survivors’ sex lives, published in Cancer Nursing in 2006, I was struck by the broken record of studies that all said the same thing—essentially, “breast-cancer survivors face sexual problems.” (See here and here.) And almost no research explored any solutions to these problems. Our study, in which we assessed specific strategies women were interested in to address their sexual difficulties, was among the first of its kind—and even it, I’m sorry to say, didn’t provide an “answer.”

Sexual difficulties last a long time. Although survivors’ quality of life often returns to normal a year after treatment, sexual difficulties often persist. Chemotherapy may push young survivors into premature menopause, along with creating vaginal dryness or pain. Aromatase inhibitors, a common treatment that lowers estrogen in the body, also commonly lead to vaginal dryness. In the study that my team published, we found that vaginal dryness remained one of the most common difficulties experienced by young survivors of breast cancer, with more than half of survivors reporting it. Genital pain and fatigue were common, too.

Survivors want proactive solutions. Research has shown that survivors are desperate for information about the impact of treatment on their sex lives. They also want solutions. In our study, we found that the young survivors surveyed were largely interested in sexual-enhancement products such as lubricants (83 percent), vibrators/dildos (51 percent), and massage lotions/oils (77 percent). They wanted to do something about the challenges they were facing—mostly to increase their own enjoyment, but also to make sex less painful (something 82 percent of women endorsed).

It’s slow going, but solutions are starting to emerge. Several years ago I worked with Pure Romance, a direct seller of sex toys, to design patient-friendly vaginal dilators that are now widely recommended by sexual-medicine providers and used by cancer survivors to address vaginal-pain issues. (I don’t profit from sales of the dilators, which are essentially “medical dildos” that range in size from very small—about the size of one’s little finger—to larger than the average erect penis.) It was while working with the company on its Sensuality, Sexuality, Survival! program that I met survivors and their doctors who were passionate about addressing their sexual-health concerns. In response, Pure Romance developed sexual-enhancement products (such as massage lotions and lubricants) that are flavorless and unscented, to be sensitive to the needs of women going through chemotherapy, for whom scents and flavors may unpredictably make them feel nauseous (reported by 20 percent of women in our study).

And researchers in Australia are currently working on a study of lubricant use among breast-cancer survivors. Other studies have found that sex therapy, or weekly support groups focused on sexual function and relationships, can be helpful. Unfortunately, most women don’t have the luxury of such services. We still don’t have a good sense of the extent to which treatments that address sexual problems for this larger group of women—such as mindfulness training, vibrator use, or masturbation exercises—may be good solutions for breast-cancer patients or survivors. We need more research, funding, and openness about sex if we’re ever going to make these kinds of breakthroughs.

Sex isn’t limited to the breasts—or the genitals. Many survivors’ sex lives are affected by fatigue, grief, anxiety, and their senses. Fatigue is one of the biggest barriers to women’s sexual quality while being treated for cancer. It can interfere with feeling ready enough to enjoy a sexual experience, alone or with a partner. Then there are sensory issues. Some cancer treatments make the skin feel too sensitive—and others make the skin, including breast skin, feel numb. Either extreme can have an impact on sexuality. 

Partners are affected, too. Ask any sex therapist, and he or she will tell you that when one person has a sexual or health difficulty, his or her partner often does, too. Men whose partners have vaginal pain sometimes develop premature ejaculation (from trying to speed sex up so as not to cause pain), low desire, or erectile difficulties (for fear of hurting their partner). Research has found that survivors’ partners are also often affected in terms of stress, changes in intimacy, and feeling as if they could benefit from information from their partner or her health-care team. (What should they expect? What should they do or not do? How can they help?) Too often, we treat patients as if cancer is happening only to them, when it also affects loved ones.

Sex is often ignored. Even today, many health-care providers don’t talk with their patients about the sexual difficulties they might encounter in connection with a breast-cancer diagnosis or treatment. The immediate focus after diagnosis is typically on survival—as it should be. And yet women and their partners struggle with their sexual relationships, too. The idea that sex is so trivial or embarrassing that it should be brushed under the rug makes no sense. Not to mention: sex is rarely ever “just sex.” It can be a form of stress relief, relaxation, and a way to express love, care, and compassion. Sex is also about connecting after going through a major trauma together, about making sense of how to live in one’s newly transformed body, not to mention an individual's or couple’s transformed psyche.