Speaking Out: Seeking Sexual Healing

“I know I’m supposed to be grateful...” I can’t tell you how many times I have heard this phrase at the start of consultation about sexual health and cancer. I am often struck by how this sentence seems to convey the message that people aren’t sure it’s OK to be distressed about something as “frivolous” like sexuality or body image in the shadow of something as serious as cancer.

They worry that “complaining” about sexual problems means that they are not adequately appreciative just to be alive. Before we say a word about sex, I find myself acknowledging the reality that we humans can be both grateful and distressed, both appreciative of and frustrated by the profound side effects of treatment, including those that affect sexuality.

Even though “quality of life” is now commonly discussed in the world of cancer care, frank talk about sexuality is strikingly missing from routine care for most folks, either during or after a cancer diagnosis. Although patients are regularly asked about other side effects, such as nausea or pain, most are never queried about issues such as lack of desire, changes in sexual function or concerns about body image. Yet, we know that the majority of cancer patients and survivors face some kind of bothersome changes in sexual health, either short- or longer-term.

Common challenges for women often fall into three categories:

• Genital symptoms such as dryness, burning and irritation.
• Sexual symptoms such as lack of lubrication, discomfort or pain, and impaired sexual function.
• Urinary symptoms such as urgency, discomfort when urinating and recurrent urinary tract infections.

Although these symptoms can be frustrating, a variety of treatment strategies can address them, with a range of effectiveness.

Common problems for men include not only erectile dysfunction but also changes in arousal and lack of desire. For both men and women, it is not uncommon to have significant concerns related to body image, especially in the context of various body-altering treatments. It is not obvious how to feel fully present in one’s body after cancer without also feeling a little panicky or uncomfortable, which can certainly get in the way of intimacy.

What can we do about this? First, everyone has a right to get the support and information needed to manage the sexual side effects of treatment. In the sexual health program at Dana-Farber Cancer Institute, we take a comprehensive approach to assessing sexual problems and thinking about rehabilitation. This means that we look at the biological, psychological, relationship and even cultural factors that often work in tandem. We assume that sexual renewal often hinges on addressing multiple challenges, so we focus on helping individuals and couples put together an action plan that addresses issues in harmony.

This might mean developing a plan to not only improve vaginal health by easing treatment-related menopausal symptoms but also helping a woman feel comfortable in her body, enhancing her pleasure and teaching her to expand both communication and sexual repertoire with her partner. In addition, it can be useful to involve partners directly in coaching or counseling. For example, partners may feel unsure of how to show affection in a way that feels welcome or comfortable but may not know how to broach this topic. They generally don’t receive support or help, either.

Sexual health should be considered as seriously as any other aspect of quality of life, but if you have concerns about sexual health and no one is talking about it, advocate for yourself. Tell your oncologist, nurse, primary-care doctor or any health care team member you feel comfortable with that you have concerns about how treatment has affected your sexual function. If your team is unsure of how to help, ask for a referral.

The good news is that there are more resources than ever to support healthy sexuality after cancer. Organizations such as the American Cancer Society, the International Society for Sexual Medicine, the Scientific Network on Female Sexual Health and Cancer, and the North American Menopause Society offer a wealth of online resources.

Excellent educational online resources can be obtained from many comprehensive cancer centers and hospitals, including Dana-Farber, Memorial Sloan Kettering Cancer Center, the University of Chicago’s WomanLab and the U.K.’s Macmillan Cancer Support. One innovative startup, Will2Love, provides an online platform for patients that includes interactive personalized counseling.

When a cancer survivor experiences bothersome changes in sexual function, getting care and attention is important because these problems often do not self-resolve. However, we also know that when survivors get the help they need, sexual renewal is within reach and quality of life improves. And that’s far from frivolous.

SHARON BOBER, Ph.D., is director of the sexual health program at Dana-Farber Cancer Institute and Harvard Medical School in Boston.