Reigniting Sexual Intimacy and Desire Important for Patients With Cancer

Challenges with sexuality and intimacy during a cancer diagnosis, treatment and recovery is common, although important steps to rekindle desire include open communication, vaginal health and a positive mindset, according to an expert.

“For most people who are thinking about this topic, the experience is often really the elephant in the room. We don't hear a lot about it,” Sharon Bober, director of the sexual health program at Dana-Farber Cancer Institute/Harvard Medical School in Boston, Massachusetts, explained during her recent presentation at the 12th Annual Joining Forces Against Hereditary Cancer Conference. “The good news is that more people are talking about sexual health now than ever, but we know that, unfortunately, that still means that the majority of folks do not hear a lot about this topic from their clinical team. … I often find it an interesting paradox that we live in a culture that is certainly saturated with sexual images and lots of sort of sexual ideas that we see on TV and movies, but the fact is we don't really talk about real sex and real people.”

Of note, approximately 40% to 65% of women cancer survivors report loss of sexual desire, according to City of Hope. They also reported that in a study of over 3,000 cancer survivors, 66% reported worrying about sexual function, including body image, fertility, intimacy, sexual desire and pain during sex.

Bober said that sexuality and intimacy are likely two of the first aspects of normal life to be disrupted during cancer treatment. “Sexual health is really a human right, a human experience, across the lifespan. And it's important to clarify that there is a very wide and normal range of sexual function,” she noted. “There are lots of different levels of meaning and importance that are variable, but more importantly, if there is something different that is bothersome or distressing for you, or if there is a change or a potential for change that you're worried about, it means that this aspect of your life deserves attention. Even if your doctor or your clinical team may not be bringing up the topic, it does not mean that, one, there's not help available or, two, that it is not a very valid and important topic for you to advocate about.”

A Big Common Concern

One of the biggest common concerns for patients with cancer, or those in survivorship, include changes in body image and self-esteem.

“It is pretty common that women struggle with body image and self-judgment, really starting very early on across the lifespan. And in the context of BRCA, a prophylactic surgery, cancer treatment or any hereditary cancer where people are doing preventive surgery or screening, we really need to think about what it means to be able to explore our sense of self without judgment, without being heavy handed, and thinking about cultivating a sense of self compassion, maybe similar to how we immediately might think of caring or being compassionate for a friend,” Bober said, noting that it is important to focus on what bodies can do rather than what they look like.

In her presentation, she also mentioned the importance of compassion for oneself. She said, “It's important to think of what we can do to have a sense of compassion for how our bodies have gotten us to this place today, rather than only focusing on how other people might sort of represent what a body is supposed to look like.”

In addition, Bober emphasized the importance of being proactive as women start to notice symptoms of sexual dysfunction or disruption. She said, “First of all, those symptoms are often associated with not just distress but anxiety, a loss of self-esteem, relationship distress, and we also know that many of these issues do not self-resolve. As opposed to other side effects of treatment, often symptoms of sexual dysfunction do not get better over time by themselves.”

Ways to do this include not only speaking to health care teams, but also focusing on strength and health. Bober recommended exercise, whether it be in the traditional sense or something like yoga or dancing. “Just moving one's body, getting active in the body and being able to feel grounded in our body, without feeling panicky, is a critically important place to start,” she said. “And similarly, those opportunities give us a sense to reconnect with sensation and with curiosity about sensation, where we can experiment with that and figure out what feels OK and what doesn't feel OK. Importantly, focusing on that sense of pleasurable sensation, feeling about that sense of creating opportunities to feel strong rather than waiting to feel better about our body is an important way to begin to jumpstart an experience where we feel whole again.”

Sexual Desire Also Means Sexual Health

Getting educated about what it means to restore vaginal health can also help women with or without sexual activity, according to Bober. This can mean learning how to manage dryness and restoring moisture to the vaginal tissue, as well as knowing which lubricants to use. Bober recommended water-based lubricants that are glycerin-free, as they are specifically formulated to hold water in that tissue. “(It’s) really important to moisturize both internally and externally,” she said.

Another facet of sexual health includes strengthening the pelvic floor. “Lots of women who have any discomfort or pain with or without sexual activity often do not get the benefit of information about the pelvic floor and the need for pelvic floor rehabilitation,” Bober explained, noting that many health institutions have programs with physical therapists who focus on this.

One aspect of vaginal and sexual health includes getting blood flow to the tissue, according to Bober, who said that the topic isn’t always talked about early enough for women. In order to do so, she recommended clitoral stimulation. “That's really an excellent strategy for both helping with improving orgasm and improving general health of that tissue. So, in short, vibrators feel good and are good for you,” she said.

Sexual Mindfulness

When facing a lack in sexual desire, patience, mindfulness and staying positive are key, especially when it comes to spontaneous desire. Bober explained, “The idea here is that spontaneous desire happens sometimes, but for most women, over the course of a lifetime, by the time you get to midlife … desire is something that shifts from an automatic experience to an experience which needs to be cultivated.”

This also means thinking of sex in a different way. Rather than entertaining negative thoughts, it is important to appreciate the anticipation of sexual desire. “Really take the perspective that if you feel kind of neutral about the whole thing, but you imagine having an experience which would be pleasurable and non-pressuring, but on the other hand, romantic, exciting, fun or curious, it can allow somebody to have an experience that is intriguing enough that you want to have a little bit more of it,” she added. “We need to harness the power of the mind. We need to think about those automatic negative thoughts and how we might replace those with other kinds of thoughts.”

Overall, Bober said that through it all, accepting change and creating a new normal is the most important. Open communication not only with oneself, but with a partner, was also encouraged. She said, “Please talk with your team, even if your provider is not bringing up this topic. Ask about how any treatments might have the potential to impact sexual function, ask about anything that you need help with. … Don't hesitate to advocate for this topic.”

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