Brenna Gatimu, 34, of Casper, Wyo., was diagnosed with Stage 3 breast cancer in 2020. She quickly had chemoradiation, and both her breasts and ovaries were removed. She now takes a medication that suppresses any remaining estrogen in her body.
Gatimu’s experience is not uncommon. As cancer survival rates in the United States improve, many survivors are left with permanent changes to their body — outwardly and functionally. Some feel particularly unprepared for persistent changes in their sexual functioning.
“Sexuality is a very big issue, and unfortunately, the avenues to get help are often limited because people are concentrating on helping [patients] live through cancer, and really concentrating on quality of life but devoid of sexuality,” said Don Dizon, a professor of medicine and surgery at Brown University and the founder of the Sexual Health First Responders Clinic at the Lifespan Cancer Institute.
In 2022, approximately 18 million people with a history of cancer were living in the United States. The number is expected to increase over time.
“As people live long lives after cancer … these questions on the permanent, long-term side effects of treatment are something we have to address,” said Sharon Bober, founding director of the sexual health program at the Dana-Farber Cancer Institute and an associate psychiatry professor at Harvard Medical School.
“We are looking not just at what people do functionally, but we’re also thinking about people’s experiences of themselves being whole, having a sense of integrity in their body — even after things change,” Bober said. “We’re talking about an experience of how people relate to a partner, we’re talking about dating, we’re talking about emotional and sexual relationships that undergo changes themselves.”
“We’re also thinking about people’s experiences of themselves being whole, having a sense of integrity in their body — even after things change.”— Sharon Bober, founding director of the sexual health program at the Dana-Farber Cancer Institute
Some cancer centers have created programs dedicated exclusively to sexual health for patients with cancer — such as Massachusetts General Hospital and Memorial Sloan Kettering in Manhattan. These centers are still relatively rare, but their numbers are increasing.
Those without access to a comprehensive center should consider seeking out “specific practitioners who have relevant expertise, such as certified menopause specialists, urologists or urogynecologists who specialize in sexual medicine, pelvic floor physical therapists or certified sex therapists in the community,” Bober said in an email.
Patients can also access a growing body of information.
“There are really more resources now than there ever have been and there are a lot of organizations that now have really good information and education on their websites,” Bober said. “I would just say people should feel free to access the growing amount of supports that are out there. And that’s the case both for patients and providers.”
For example, the Scientific Network on Female Sexual Health and Cancer has a host of resources, including webinars, a page with links to several online resources and a “find a provider” page to search for help by location. The American Cancer Society also has a fairly comprehensive overview of navigating sex and cancer.
Even before intimate encounters, body image can be an issue. Jacob Lowy, 31, a fourth-year medical student at the University of Michigan, was diagnosed with metastatic sarcoma in 2021. Since then, he has had to deal with dating.
“It definitely messed with my psyche a lot to talk to people because it feels like you’re hiding something at first,” Lowy said. “But there’s no real advice for how to do it properly.”
Besides fatigue and surgical complications from his two abdominal surgeries, he has experienced decreased libido and erectile dysfunction.
“I went from feeling … invincible and very strong to my body feels like a wreck on the inside,” Lowy said.
Physicians often don’t discuss sexuality with patients for many reasons, Dizon said. “Partly it’s because I don’t think oncologists are trained in talking about sexuality,” he said.
When sexuality is discussed, much of the talk often focuses on what’s safe — for example, when it is safe to have sex during chemotherapy. Bober said “potential sexual side effects and sexual rehabilitation really is not routinely incorporated into care. So a lot of people struggle on the other side of treatment and feel pretty isolated.”
“I went from feeling … invincible and very strong to my body feels like a wreck on the inside.”— Jacob Lowy
But when the topic is broached, doctors often have treatment recommendations.
Sarah E.A. Tevis, an assistant professor of surgery at the University of Colorado, recently started asking her patients about sex after a patient questionnaire she distributed flagged the issue.
“This wasn’t a common thing I talked to all of my patients about, and ever since I’ve started bringing it up, I feel like almost every single patient I talk to is having some problem that we can probably help with,” Tevis said.
Even if your oncologist does not know how to help, someone is probably out there who can.
“This is something that people should be empowered about — that as with other aspects of our health, if you’re having issues, give it voice, ask for specific assistance,” Dizon said. “And if your doctor doesn’t know or doesn’t want to discuss it, then ask for a referral.”
For Gatimu, she has done her best to adapt to a new normal but still struggles.
Since treatment, she has experienced vaginal dryness, difficulty achieving orgasm and lack of libido. She also has no sensation in her reconstructed breasts. Gatimu has sought advice through a combination of doctors and friends who are cancer survivors.
“I still have times where I really struggle with the comparison or the wishful thinking of ‘Oh my gosh, if only this didn’t happen and I didn’t have to live through this, where would [I] be?’ On the positive side, I have gained such a self-awareness and such a self-confidence within myself,” Gatimu said.
One 44-year-old man who was diagnosed with Stage 3 rectal cancer in 2018 underwent chemotherapy and radiation before having surgery that resulted in an ostomy pouch, a bag that collects stool outside the body.
“It’s tough for me not to view my body as … broken,” said the man, who asked not to be named for privacy reasons.
For him, sex with his partner now involves going to the bathroom to empty out the ostomy pouch and ensuring that it is as flat as possible so it does not get in the way. He also takes Viagra for the erectile dysfunction he has had since treatment.
“I am very fortunate that I have a loving partner who loves me for who I am and we’ve adjusted, but now sex is really tough to have spontaneously,” said the man, who lives in Chapel Hill, N.C.
A common misconception is that only certain cancers affect sex.
“We tend to think of sexual health as an issue [only] for people treated for sex-related cancer,” Dizon said. “But that’s actually not true. There’s a growing literature that even people treated for, say, colon cancer and lung cancer — they actually have issues related to sexuality.”
He points out, for example, that chemotherapy itself can affect the vaginal mucosa, which can cause pain with sex.
Unfortunately, many cancer patients feel alone in their struggles.
No one mentioned sexuality to the Chapel Hill resident, except for a brief, awkward conversation with his radiation oncologist regarding the possibility of infertility after treatment.
“People often will equate sexuality and fertility, but those are very different conversations,” Dizon said.
“Their goal is to save a life.” the Chapel Hill resident said. “And they were very good at doing that. I willingly put my life in their hands, but sex was an afterthought.”
Once he got the courage to broach the subject, he was prescribed Viagra, which has been working well.
“I think the biggest advice I would give is, do not be afraid to ask questions,” he said. “If something isn’t right, talk to the doctors about it.”
Netana Markovitz is a resident physician at Beth Israel Deaconess Medical Center/Harvard Medical School in Boston.
A previous version of this article incorrectly referred to a bag that collects stool outside the body as a stoma. It should have said ostomy pouch. A stoma is an opening in the body that, in this case, leads to the ostomy pouch. The article has been corrected.
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