“I know I am supposed to be grateful … ”
I can’t tell you how many times I have heard this phrase at the start of a consultation about sexual health and cancer. I am often struck by this particular sentence, which seems to convey the message that people feel unsure if it's ok to be distressed about something as “frivolous” as sexuality or body image in the shadow of something as serious as cancer.
It’s as if “complaining” about sexual problems must mean 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 grateful and distressed, appreciative and frustrated with the profound side effects of treatment, including those that impact sexuality.
Even though “quality of life” is now commonly referenced in the world of cancer care, it is striking how frank talk about sexuality is still not part of routine care for most folks, both during and after a cancer diagnosis.
Although patients are regularly asked about other side effects such as nausea or pain, most people are never queried about issues like lack of desire, discomfort with sexual activity, or concerns about body image. In fact, we know that the majority of colorectal cancer survivors face some kind of bothersome changes in sexual function, either short-term or longer-term.
Common challenges for women may fall in the category of genital symptoms such as dryness, burning, and irritation; sexual symptoms, such as lack of lubrication, discomfort or pain, and impaired sexual function; and/or urinary symptoms, such as urgency, discomfort when urinating, and recurrent urinary tract infections. Although these symptoms can be very bothersome, fortunately there are a variety of very effective treatment strategies that can address these problems.
Common problems for men include erectile dysfunction, changes in arousal, and lack of desire. For both men and women, it is not uncommon to have significant concerns about body image especially in the context of an ostomy and/or pelvic radiation for example. It is not always obvious how to feel fully present in one’s body after cancer without also feeling a little panicky—and that can certainly get in the way of intimacy.
So what can we do about this?
First, everyone has a right to get the support and necessary information needed to manage the sexual side effects of treatment. In the Sexual Health Program at the Dana-Farber Cancer Institute, we take a comprehensive approach to treating sexual problems and thinking about sexual renewal. This means that we look at the biological, psychological relationship and even cultural factors that are often working in tandem. We assume that sexual renewal often means addressing multiple challenges, so we focus on helping individuals and couples put together an action plan that addresses issues in harmony. For example, this might mean putting together a treatment plan that aims to not only improve vaginal health in the context of chemotherapy-induced menopause but also focuses on helping a woman feel comfortable in her body, enhance personal pleasure, and learn to expand her sexual repertoire and sexual communication with her partner.
Sexual health should be considered like any other aspect of quality of life. What does this mean if you have concerns and no one is talking about it?
First, it is totally acceptable for you to advocate for yourself and tell your oncologist, nurse, primary care doctor (or anyone else you feel comfortable with on your treatment team) that you have concerns about how treatment has impacted sexual function and that you would like to get some help.
Second, the good news is that there are now more resources than ever about sexuality after cancer. Organizations such as the American Cancer Society have resources online that directly address sexual health for both men and women. The DFCI Sexual Health Program offers workshops throughout the year and patients are welcome to make an appointment for individual and/or couples’ consultation in the Sexual Health Program.
Sharon Bober is the director of the Dana-Farber Cancer Institute Sexual Health Program. She will speak at AllyCon 2019, the Alliance’s national conference.