Anyone who has been impacted by cancer knows that preventing and treating the disease is just the tip of the iceberg.
But what often does not make its way into the pamphlets that line the halls of the cancer center is the toll the disease can take on someone’s sexual health.
“We're born with an innate sense of what we enjoy, what pleasure feels like, what intimacy feels like and it's not until that is challenged that we realize it's a really complicated concept,” said Don Dizon, MD, an oncologist who specializes in women’s cancers.
Dizon is also the director of the Pelvic Malignancies Program at Lifespan Cancer Institute and the founder of the Oncology Sexual Health First Responders Program.
"Sexual health is a multiple-domain experience. It's everything from the feeling of sensuality, to how one feels about their own body image, to their experience of climax, and the sense of satisfaction."
“Unfortunately, after a diagnosis of cancer and its treatment, every aspect is prone to be impacted.”
How Cancer Impacts Sexual Health
To begin, Dizon explained that “just hearing the words, ‘You have cancer,’ is already a shock and a trauma that we experience psychologically.”
From there, the impacts on sexual health can differ based on how the cancer is treated.
Surgery and radiation, for example, can cause pain and decrease sensation in the affected area, both of which can affect someone’s sexual health. Dizon said about 90 percent of breast cancer patients report their breasts playing an important role in intimacy, also known as breast-specific sensuality.
This is also the case for gynecologic cancer patients—an umbrella term that includes endometrial, cervical, ovarian, vulvar, and vaginal cancers. One study found that 89 percent of endometrial cancer patients, including those treated with surgery alone, experienced some form of sexual dysfunction.
Systemic treatments, like chemotherapy or endocrine therapies, can also negatively affect someone’s sexual health. The latter is because of the essential role estrogen plays in maintaining vaginal health.
Because medications used to treat hormone-positive breast cancers block estrogen production, people on these medications can develop what is called genitourinary symptoms of menopause (GSM): vaginal dryness, pain during intercourse, a feeling of burning, or a loss of libido, among other symptoms.
These changes in how your body looks and feels can all negatively body image and self-acceptance.
Managing Side Effects to Reclaim Pleasure
But that doesn’t mean you should lose hope.
“There are evidence-based interventions that can actually improve the sexual lives of our patients and their partners,” assured Dizon.
Vaginal moisturizers, Dizon said, can be extremely helpful in treating dryness if used often and reapplied before planned sexual activity. A diluted form of lidocaine is also successful in managing pain at the vaginal opening for those having penetrative sex, he said.
For those who need more, he pointed to research led by Debra L. Barton, RN, PhD of the University of Tennesse Knoxville who specializes in addressing the sexual health needs of breast cancer survivors.
Through their studies, Barton’s team determined that using vaginal Dehydroepiandrosterone (DHEA), a form of local hormone therapy, is not only effective but is also safe for treating pain and dryness, even in those with hormone-positive breast cancers. Those on aromatase inhibitors were found to have their symptoms improve without any changes to the estrogen levels in their blood.
Pelvic floor physical therapy is another recommended treatment for genitourinary symptoms.
Through discussion, physical exams, and exercises, a pelvic floor physical therapist can help patients assess and manage treatment-related side effects that could be impacting their sexual health like coordination, scar tissue, and muscle strength.
A medically-informed therapist can be another helpful resource for patients.
Brittany Pinto, LMSW, a therapist at Boutique Psychotherapy in New York, N.Y., emphasized that a medically-informed clinician can provide patients with answers and advice about what can be considered normal and what isn’t, given their prior knowledge of diagnoses and treatments.
Talking to a therapist who understands the specific challenges people impacted by cancer face can help someone reconnect with their emotional and intellectual intimacy, both of which can play a role in sexual intimacy.
“There's no playbook, no script for a cancer diagnosis, and it's not a one-size-fits-all approach,” said Pinto. “With help from a care team, we'll be able to guide you in the right direction.”
“A sex therapist can [also] help you in re-establishing intimacy and pleasure,” said therapist Kimberlin Shepard, LMSW, offering another resource.
She continued that they can help “in re-establishing that mind-body connection in order to get back to a place of enjoying sex, both with yourself and with a partner.”
Why Aren’t We Talking About Sex?
Despite impacts on sexual health being so widespread among cancer patients, the topic is often swept under the rug. One survey found that less than a third of cancer patients were “formally asked about their sexual health from a provider.”
One reason that could be, Dizon said, is that during follow-up appointments “your doctor has his or her own agenda.” He explained that their intention is often to see how you’re doing, that side effects are addressed, and that medications are being taken as directed. “So things about survivorship oftentimes are left out of that conversation.”
But, he emphasized, your physician is not the only person on your care team who can help you address concerns related to sexual health. Think of others on your team who you have come to know and trust throughout treatment, such as a nurse navigator or other specialist.
“Maybe it is not the oncologist who is the best equipped to hear issues related to sexual health,” Dizon said. “But in that cancer team, there may be someone you are more comfortable [with] and that person can be your advocate.”
"Cancer does take a lot from somebody and there's so much that you have to give up when you're diagnosed with cancer, but your sexuality does not have to be one of them."
