By Molly Longman
On Dec. 2, 2015, Erin Burnett was two days out from her wedding and existing in the buzzy state of bliss that’s reserved for people who are very much in love. That morning, as she was happily daydreaming in the shower, she noticed something was different about her left nipple. She took a closer look — it seemed to be inverted. She felt an immediate chill; the sudsy water suddenly felt like ice.
She called her doctor, who said Burnett could come in during her lunch break to get her breast checked out, just as a precaution.
After some testing, the doctor told Burnett to come back after her wedding day. She tried to put the experience out of her mind until after the ceremony. Just 12 days after tying the knot, at 28 years old, Burnett got the call. She had stage II, triple-positive, invasive ductal carcinoma. Her honeymoon would be cut short.
The diagnosis impacted Burnett’s life in myriad ways — but a major factor was the impact on her sex life. “I had a brand-new marriage, with no honeymoon phase,” she remembers. “I used to joke around with my friends and say: ‘You guys are having these crazy sex lives where someone pulls your hair, while my husband’s picking my hair up off the ground.'”
Burnett underwent a double mastectomy and a hysterectomy, which induced what’s known as medical menopause. “I didn’t know until it happened that I was gonna have vaginal atrophy, vaginal dryness, pain with intercourse, lack of lubrication, and lack of libido [following the hysterectomy],” she says. She also faced emotional hurdles, especially as she coped with losing her breasts and went through painful attempts at reconstruction.
Throughout the treatment process, Burnett and her medical team were so focused on saving her life that her quality of life often took a backseat. In particular, the quality of her sex life was not top of mind for her or her providers.
This is a common refrain from cancer survivors, who say that the medical establishment tends to leave out or breeze through conversations about the ways cancer can impact your sexual health, especially because they’re rightfully so laser-focused on keeping you alive. But this can have serious ramifications for people’s sexual health, mental health, and relationships, says Ericka Hart, MEd, a sex educator and breast cancer survivor. “They’re usually not concerned about the ways that you are gonna experience pleasure in the future, they just want to fix you — and in their mind, cancer is the issue they’re fixing,” they say.
This often puts the onus on patients to bring up questions about how their diagnosis and treatment will affect their sexual health.
Anna Crollman, a 37-year-old breast cancer survivor from North Carolina, remembers feeling incredibly nervous about asking her provider about the sexual side effects, such as painful intercourse, she was experiencing during and after her treatment. “I like to call it the ‘doorknob question’ that you squeeze in right when they’re about to leave and their hand’s almost on the door,” she says. “You say: ‘Hey, just one more thing.'”
But if sexual health is brought up earlier and more often by providers, it’s not only easier for patients to discuss their issues when they’re ready to do so, but also for them to find more satisfaction with sex in the long run — and to feel less alone, says Don S. Dizon, MD, a professor of medicine at Brown University and director of the Sexual Health First Responders Clinic at Lifespan Cancer Institute.
It’s common, especially for women and nonbinary people, to blame themselves for sexual health issues and feel they have to suffer alone. “Most of the people I see feel like they’re the only ones going through this,” he says. “When I tell a person, ‘This is really common,’ there’s a weight lifted off their shoulders because [until then,] they think they’ve done something wrong.”
But patients shouldn’t be deterred from seeking information about improving their sexual health, despite cancer, and they shouldn’t have to work up extra courage to get answers. As Dr. Dizon puts it: “everyone deserves a sex life.”
The Physical Impacts Cancer Can Have on Sex
Breast cancer treatments can dampen physical desire in several ways. Breasts are an erogenous organ, Dr. Dizon says, and oftentimes a mastectomy is required as part of treatment. “The loss of breast-specific sensuality is something everyone will go through to some degree,” he says. “The process of naming that is really important, because people don’t consciously think of the breast as a sexual organ, and it is.”
Meanwhile, for those with hormone-positive breast cancer, doctors often prescribe drugs called aromatase inhibitors that lower estrogen levels, causing medically induced menopause. “These notoriously have a negative effect on sexuality, whether it’s vaginal dryness, painful activities, or loss of desire,” Dr. Dizon says. “Chemotherapy can also harm body image, because people gain a lot of weight, and it can cause neuropathy and physical side effects like nausea and diarrhea.”
As patients know, these physical impacts can take a real toll.
Shonté Drakeford, a nurse practitioner and patient advocate in Maryland, was diagnosed with stage four metastatic breast cancer in 2015, after being dismissed by providers for six years when she presented with symptoms. Drakeford says that before her diagnosis, her sex life with her high school sweetheart was “amazing.” For the first two years of treatment, she had no major sexual side effects, though she had to be careful about what positions she took part in, as the cancer had spread to her lungs, lymph nodes, ribs, spine, and left hip. “I asked my doctor what I could do that wouldn’t harm me, physically, because I was fragile,” she remembers. “He got all red and was embarrassed to answer.”
About three years into treatment, Drakeford noticed that her libido had lessened, and she was experiencing vaginal dryness. “Even though, mentally, I wanted to [have sex], my mind and vagina didn’t connect,” she says. “It was like a slow transition into a menopausal state.” This was due to her treatments, which she couldn’t stop. “I’ll be on treatment forever; this is lifelong for me,” she says. “I wish they had Viagra for women.”
Drakeford’s doctors told her that vaginal estrogen therapy — which some menopausal people use to help with some sexual side effects — wasn’t an option for her; her cancer was hormone-positive, so it essentially fed on hormones like estrogen. “It’s all about safety,” Drakeford says. “Am I willing to risk my health for sexual satisfaction?”
Cancer Can Cause Mental Health Barriers to Satisfying Sex, Too
Beyond these physical questions, mental hurdles are also prevalent amid cancer treatments. Many of us have ideas about what sex “should” look like, and those are challenged by a life-changing diagnosis like cancer, says Emily Nagoski, PhD, a sex educator and author of “Come as You Are” and “Come Together.”
Hart says that they felt “disconnected from their body” after their cancer diagnosis, something that they believe to be common for other survivors, but that looks different for everyone. As they were being treated for breast cancer in 2014, they struggled with how their body was constantly being touched, especially by white medical staff. Hart, who is Black, found that this challenged their understanding of bodily autonomy and lead to them distancing themself from their romantic partner, who was white. “I didn’t want a white person to touch me sexually,” they remember.
Hart says that something else shifted following their mastectomy: they felt like people could no longer see them as a whole person — they only saw Hart’s illness. At one point in their healing process, Hart went topless in public, baring their double mastectomy scars to end “the lack of Black, brown, LGBTQIA+ representations and visibility in breast cancer awareness.” As important as this messaging was, Hart felt “de-sexualized” by some of the responses their display elicited. “People would see my topless pictures and respond: ‘Oh my God, you’re so inspiring,'” they say. “But if anybody with nipples went topless on the internet, that would not be the response.”
This is a commonly felt sentiment among breast cancer patients — they feel society begins to see them only as patients, rather than sexual beings. Hart points out that you rarely see sex scenes with cancer patients in the media. FWIW, the only one I could think of was in “Desperate Housewives,” which involved a somewhat superficial plot about Tom feeling uncomfortable having sex with Lynette when she wasn’t wearing her wig, and Lynette fearing it meant he was no longer attracted to her. (This is a real fear among patients, though Dr. Nagoski notes: “In a great relationship, we’re attracted to the human being we chose to be with, not to the body parts of that human. It’s normal to have feelings about changes to our bodies and our partners’ bodies, of course, but a strong relationship adapts to those changes with love and trust.”)
Meanwhile, Crollman, who was diagnosed with cancer at 27, adds that the mental barriers to sex after cancer were “the hardest part.” “The pain, of course, is physically uncomfortable, but even though my partner and I tried so hard to stay in open communication, the reality was, we went through a very, very dry spell,” she says. “I was feeling really lost, mentally. I went through a deep depression, and I was seeing a therapist to cope because I really didn’t feel comfortable in my body.” After having a double mastectomy, Crollman felt “vulnerable” being in front of someone else while she was still “struggling to come to terms with the body that I had.”
Plus, not being intimate for a period due to these understandable challenges led to “more physical triggers and trauma around that experience — around the fear of it, around the pain that was related to it because of the side effects,” Crollman remembers. “So it was kind of this multileveled, emotional, psychological challenge.”
Finding Pleasure Again Post-Diagnosis
The physical and emotional stressors surrounding sex are very real, but reframing can help cancer patients to work through them. “The stakes around treatment certainly may be high, but the stakes around sex are not” — or at least, they don’t have to be, Dr. Nagoski says.
Although our culture tells us we can somehow “fail” sexually, especially “if we don’t perform according to some external, bullshit standard, the reality is there is nothing to lose, there is no way to fail,” Dr. Nagoski says. “We only imagine we’re doing it ‘wrong’ when we compare our experiences to some bogus cultural script of what sex ‘should’ be like — a script that was always irrelevant to our lives, but after a cancer diagnosis is just an absurd, pointless, and even cruel standard against which to assess our sexual connections. There is nothing at stake with sex; you have nothing to lose, only pleasure and connection to gain.”<
Pleasure can look different to different people, and sex is just one piece of it. In order to maximize satisfaction for all parties involved, Dr. Nagoski says you first need to get on the same page as your partner — and that means getting curious. "If your partner wants sex, ask each other these important questions: What is it that you want, when you want sex with each other? And what is it that you don't want? When don't you want sex with each other? And, perhaps most importantly, what kind of sex is worth having — as in, what makes sex worth not spending that time watching 'Parks & Recreation'?"
Also, “You could decide to take all sex entirely off the table,” Dr. Nagoski says. “That’s a legitimate choice.” Hart adds that some couples may decide to open up their relationship amid cancer.
However, many people with cancer do want to try to explore sex and pleasure again, whatever that looks like for them. But because there are so few good resources out there and so much stigma around the topic, they may do so with varying levels of success.<
Hart, for example, discovered that kink and BDSM was a sexual space of healing for them. "After being poked and prodded and having surgeries and chemotherapy literally once a week with a giant needle, I wanted to go into spaces where I could reclaim that pain," they say. "So doing things like impact play — being consensually spanked and hit — I could reclaim the pain after years of feeling like I didn't have a choice of opting into it."
Hart also recommends working with a sex therapist to find pleasure again, which may include finding ways to incorporate chest play after a mastectomy, whether you still have nipples or not. Dr. Nagoski recommends the book “Better Sex Through Mindfulness” by Lori Brotto, who specializes in sexual health interventions for those with cancer and for survivors of sexual trauma.
Dr. Dizon adds that some healthcare providers might be more comfortable pointing their patients to resources rather than giving them actual advice about their sex lives, so asking your doctor if they have recommendations for something to read or a support network you could join might be a smart tactic for finding the support you seek.
Drakeford says she hasn’t been shy about asking for resources but still hasn’t felt satisfied with the level of pleasure she’s experienced since her diagnosis. She’s tried vaginal moisturizers, lube, and sex toys and hasn’t seen much success. “I even tried that slippery elm herb — it did nothing. Not a thing!” Drakeford says. “I’ve been going on nine years without things improving. I hope researchers can get on this and find something that actually works for people like me . . . even if it’s not during my lifetime.”
Burnett, for her part, has tried to be intentional about pleasure from the very beginning — though it hasn’t been easy.
While she was undergoing chemo, Burnett says, she and her partner scheduled sex around treatments. “The first couple of days after chemo, your body’s pretty toxic, so you aren’t going to be intimate,” she says. “Then seven to 10 days after is when you’re at your sickest. So for us, it was usually around that two-week mark that we’d schedule time to be intimate, before the next round.”
Since going into medical menopause, Burnett’s tried multiple tactics to make sex post-breast-cancer more pleasurable with her partner, including lubes, moisturizers, and laser therapy. (Dr. Dizon notes it’s important for those with breast cancer to find options that have specifically been studied in people with breast cancer, not the general population.) She also had to mentally get used to the changes in her breasts — though getting a mastectomy scar tattoo helped her regain some confidence, both in general and in the bedroom.
Although Burnett didn’t get the honeymoon phase she’d always dreamed about, she did learn quickly that she’d found a partner who’d keep every word of his vows. “There is something really intimate about someone who can be there for you and hold your hair back as you’re throwing up, and pick it up as it’s falling out,” she adds, nodding to her old joke about her friends having their hair pulled.
The couple’s 10-year anniversary is coming up next year, and they’re planning to finally take that honeymoon they never got. “It’ll be a different kind of honeymoon, because my body is just different from most other 36-year-olds’ out there. But it will also be a celebration of surviving 10 years.”
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