Cancer is a shit diagnosis for anyone, period. It strips a person of their daily life, throwing their relationships, career, and general sanity into chaos. And younger women who survive cancer are often dealt a unique hand of related health issues, including early menopause and fertility issues, which can lead to a decrease in libido. During treatment, as well as after, women also face a disproportionate impact on their sexual well-being that can affect them for life—yet there seems to be a void when it comes to talking about that toll.
The statistics are there: over 250,000 living American women under forty have been diagnosed with breast cancer. For both women and men, one's young adult years are a pivotal time in life to explore and learn about one's sexuality. But for younger women who survive cancer of various forms, chemotherapy can also affect one's body image and self-esteem in profound ways. And in a survey of 115 cancer survivors under 50, more than half reported genital dryness, and many reported exhaustion and genital pain as post-survival symptoms affecting their sex life. Life after cancer clearly poses notable changes in a person’s sex life—but folks also deal with changes in sexuality while undergoing treatment, too.
So much of how women carry and view themselves is tied to their bodies, and, in turn, their sexuality. A cancer diagnosis can not only cripple a woman's sense of who they are as a female, it can completely alter her understanding and exploration of her own sexuality. Although sex may be the last thing on a cancer patient's mind, several women I spoke with—who are currently in remission, but spoke to the ways cancer affected them both during treatment and afterward—confirmed it was something they grappled with.
Two of the most prominent sexual symptoms female cancer patients experience are dryness and pain in the vulva and vagina, symptoms that often follow the various surgeries and chemotherapy treatments cancer patients must endure, according to Dr. Jeanne Carter, a psychologist and sex therapist at Memorial Sloan Kettering Cancer Center in New York. "If you're having dryness and pain it's hard to have libido," Dr. Carter said. "It's hard to get aroused, and it's hard to discuss that sometimes."
Once they are in remission, Dr. Carter noted female patients continue to deal with sexual changes. The need for vaginal moisturizers, which is not lube, becomes important for survivors. Even though patients may undergo different symptoms and changes within their sexual repertoire, Dr. Carter noted that understanding what happens to their bodies before and after cancer is equally as important.
Talking about sex is awkward. Sharing your sexual problems with someone, whether it's your doctor or a partner, can be a process riddled with insecurity, shame, and embarrassment. And it can be hard to keep track of what's normal for your body and what isn't. As a result, women can be unsure whether to address these changes with their doctor. "Women want to talk about it but they don't know whether they should bring it up or not. Their providers know it's a concern but sometimes they're not sure whether they should bring it up or not," Dr. Carter said. "It leaves people sort of feeling alone."
It's also hard to feel desirable and literally have sex when you've got an ileostomy bag (also known as a poo bag) attached to you, said Polly Rodriguez, CEO of Unbound, an online company that sells sex products for both women and men. Rodriguez was diagnosed at 21 with colorectal cancer and given a 30 percent chance to live. "Cancer is a fucking roller coaster that you desperately want to get off of, but can't," she told me.
Rodriguez said in addition to being physically exhausted, she felt completely undesirable during treatment. "So much of sexuality is enjoying and appreciating your body, and I hated mine," Rodriguez said.
Ten years after her diagnosis, Rodriguez is in remission and said she has an active and healthy sex life; she said her experiences partly inspired her to start Unbound, "because I realized how underserved female sexuality is in today's marketplace," she said. "I also realized how uneducated I was about my own body. I didn't even know what menopause was, much less that I was going through it."
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For Erika Lee, a sporting brand account manager in Los Angeles, a bone cancer diagnosis altered her approach to communication and relationships. Diagnosed at the age of 18, Lee, now 28, said her college experience vastly differed from that of her friends.
After undergoing several major surgeries and chemotherapy, Lee said she just couldn't relate to folks her age. "During those years in college, that's when all of your friends are going on dates, living on campus, hanging out with boys, and focusing on other things," she told me. In turn, Lee dated and spent more time with older individuals she felt she had more in common with.
It's hard to connect with, much less sleep with, someone you can't relate to. "Female sexuality is a huge interplay between the mind and the body," Dr. Carter said. "If they're in a relationship, they worry about these symptoms and changes and how it impacts their partner." Navigating dating and relationships is doubly difficult for cancer patients, and can be accompanied by a sense of guilt or feeling like an inconvenience.
"The overwhelming mindset was that I was concerned that it would be a burden on someone else," Lee said. "I didn't want someone else to feel like they had to take care of me. Subsequently, that made it much more difficult to be vulnerable with somebody, and that includes emotionally in the relationship, but also sexually."
However, learning to cope and accept the changes in mental and physical health, Rodriguez noted, altered how she internalized her cancer battle. "It taught me that we all have our own paths in life, and sometimes the things that feel like the greatest derailments are the greatest gifts."
Despite sexual challenges and obstacles, both Lee and Rodriguez made one thing clear: a cancer diagnosis didn't eliminate their sex lives. Both women emphasized the importance of communication, and learning to rely on their partner for support. "For me, it's almost been like this blessing of permission," Lee said. "To talk about things that might be uncomfortable or awkward at first, but then it opens up this whole new line of communication that we wouldn't have had otherwise."
Plus, having the tools to have those awkward conversations are equally as important. "If I can get partners to work as a team, it's really a wonderful thing," Dr. Carter said. Speaking with patients about the changes they undergo, and sending them home with the resources they need—be it lube, communication strategies, or dilators—can empower patients. "Different doesn't have to be bad."
Battling cancer ruthlessly forces people, especially women, to mentally triage one's life. Often, understanding how it affects one's sex life comes last. And though it comes last, that doesn't mean it—or cancer patients—shouldn't come at all.
Camila Martinez-Granata is a New York City–based writer.