On my surgery day in spring of 2020, I was led through a near-empty surgical wing in paper slippers, swinging a plastic bag containing my street clothes. Knowing I’d be completely out of control over my destiny for the next several hours, I felt a strange sense of calm. That feeling remained with me through chemo, radiation and another surgery, even amidst the pandemic. After all, there’s certainly no shortage of T-shirts, mugs and other swag encouraging women like me to keep calm and carry on. We’re bold and beautiful breast cancer warriors, right?
Yet I awoke one day, when major treatments were over, to the grim realization that the interventions that kept me alive had also left me with a mutilated chest, a bald head and a forgetful mind (thanks, chemo). I was also dealing with the effects of being medically put into menopause to discourage a recurrence of my hormone-driven cancer. My oncologist discharged me with a 10-year prescription for estrogen inhibitors and a referral for calcium injections to prevent brittleness in my bones … which suddenly seemed to feel like very old bones.
Soon after, I sat in a physio clinic, shirtless and feeling a bit broken, learning how to massage my chest to stop lymphatic fluid from pooling in my arms. (“Think of it as a traffic jam,” the therapist said.) As I faced my changed body in the mirror, I felt a mixture of gratitude and grief.
I’d been rescued, yet I was utterly lost.
An open secret
It’s common for women to struggle with sexual health issues after breast cancer. Yet surprisingly, most resources about breast cancer devote scant attention to this. For example, the 2016 version of Dr. Susan Love’s Breast Book (a 690-page tome I’d checked out from my cancer centre’s library) devoted just seven pages to the topic. While it’s easy for patients to find information about how to modify our bodies to look “pleasing” with clothes on – through reconstructions, implants, prostheses and magic bras – there’s relatively little about regaining or rediscovering our own pleasure.
My cancer team, with its focus on saving lives, didn’t take time to address sexual health during my appointments. I didn’t bring it up either for fear of wasting precious minutes of my appointment in an over-stressed health system. But I’ve since learned there is an urgent need to make space for these discussions. Quality of life is an indicator for health and even longevity – and for most people, a healthy sex life figures into that.
Among breast cancer patients, diagnosis and treatment often has a negative impact on sexual health. A research review from 2022 of women with a variety of types of cancer found that 66 per cent experienced sexual health issues. Women with breast or reproductive cancers are specifically affected, reporting sexuality-related symptoms or problems including decreased libido, pain with intercourse, vaginal dryness and inability to orgasm. Patients like me, with hormone-driven breast cancer, typically have to take steps to shut down the body’s production of estrogen via an infusion or removal of the ovaries, followed by on-going endocrine therapy to continue suppressing the body’s release of estrogen. In addition to their crucial role in helping to prevent the recurrence of cancer (yay!), these endocrine therapies affect women’s libido and fertility (boo!).
For someone who hasn’t yet had children, the loss of fertility can be devastating. For a woman who’s dating, there’s the difficult decision about how to approach the details of menopausal sex with a potential new partner. For all of us, estrogen loss changes our relationship to sexuality. We struggle to find happy endings – the solutions that will keep us and our partners satisfied.
In the online cancer support groups I belong to, not every member has gotten a happy ending. Some women have been abandoned, divorced or ghosted sexually by their partners. Others struggle with partners to negotiate a slower pace for an act that’s usually associated with spontaneity.
It should be no surprise, then, that some breast cancer patients report stopping their endocrine therapy in an effort to solve their sexual problems and keep their partners happy. One systematic review from 2022 found that 25 per cent of participants stopped using endocrine therapy within five years, noting that adverse events were associated with quitting the therapy, including recurrence of cancer. The report added that non-adherence to the therapy was associated with “low personal or clinical social support.” While there were many reasons for non-compliance (including in some cases advanced disease), the review also cited a 2020 qualitative study that noted some women viewed the side effects of the endocrine therapy as “worse than the disease.”
Providers also tend to broach the topic of sexual health with male patients more than they do with female patients. A 2019 study on cancer patients found that providers asked male patients twice as often about how their diagnosis was impacting their sexual health. Of the respondents in that study (of all genders), 87 per cent reported that cancer treatment impacted their sexual health.
When providers don’t address sexual health, some women turn to grassroots connections, forged through social media and friends-of-friends-of-friends. This is what I did, winnowing through an array of products – some legit, some not – on Google and in social media, including supplements, yoga, topical creams and specially compounded products (such as the unforgettably-branded Scream Cream).
It was a friend that directed me to YouTube channels like occupational therapist and sexologist Tess Deveze’s Intimacy and Cancer channel that has hundreds of thousands of views. Deveze, whose practice focuses on supporting people living with disability, chronic illness and cancer, reaches beyond her local clients in Melbourne through her channel and her book, A Better Normal: Your Guide to Rediscovering Intimacy After Cancer. She also runs an online support group with more than 6,000 members. A Stage 3 cancer patient herself, Deveze is focused on empowerment.
“There are ways to reclaim our intimacy – there is hope.”
“There are ways to reclaim our intimacy – there is hope.” she says. “Because we are more than just our diagnosis.”
The movement to reclaim post-cancer sexuality
At the pelvic health clinic, from somewhere down at the end of the exam table, my counselor rattled off a list of new ingredients for my sexual wellness, many of which I could purchase directly from the clinic. “Use it or lose it,” she said, instructing me on how to work my pelvic muscles while I’m watching TV. While my earlier lymphatic massage training had been a painful reminder of how cancer changed my body, this internal workout had a more familiar theme: staying fit.
Visiting the pelvic clinic helped me reclaim my sexuality, but something was still missing. Sure, I felt more confident after some resistance training – and the use it or lose it message got me motivated, much like trudging to the gym and feeling energized afterward. But the myth of resilience also has its limits. I was reminded of the “mommy fitness bootcamps” I explored after giving birth. They’re fun … until they’re not. Projects like that quickly become toxic without a dose of compassion. After diagnosis, our inner emotional lives take as much of a hit as our bodies. Cancer changes us.
I found my way to a Facebook group for breast cancer survivors that focused on sexual health, co-run by Lindsay, a breast cancer patient.
“The level of support that our members get from their oncologists really varies,” Lindsay told me via Messenger chat. “Some warn patients about treatment side effects like joint pain and hot flashes, but not sexual side effects.” But these side effects impact sexual health. If someone’s experiencing hot flashes or joint aches from treatment, then sex or self-pleasure is less likely to be at the top of their list of priorities.
“Patients reach out to this group because they haven’t received sufficient support. Groups like ours exist to fill in some of the gaps in support, and we also help each other navigate those systems.”
I never heard the word disability spoken by my cancer team, but I hear it a lot from other cancer survivors. Whatever stage of cancer and whatever place we’re at with treatments, our levels of disability often seem like another one of those open secrets. It’s been powerful for me to see other patients acknowledge and name their disabilities instead of trying furiously to recover who they once were. Asking for help can often bring you to the strongest place.
Communication: the missing piece
The most important ingredient in navigating sexual changes can’t be bought online or from your pelvic floor specialist: it’s communication. According to research by D.H. Baucome and colleagues, cancer patients’ quality of life improves the more partners share their “feelings and thoughts about cancer.” The team identified these factors as key for healthy sexual relationships following a cancer diagnosis: candid communication about cancer-related issues; the ability to express emotions and to have one’s partner listen; problem-solving skills; and high levels of empathy.
Communication between providers and patients is crucial, too. To help their patients, providers can proactively inquire and provide the right referrals. Also, they can tune into what patients and survivors have to say about what’s worked for them. (Let’s face it: there aren’t a lot of oncology sex therapists. We need those YouTube videos!) These conversations can help patients maintain their health, keeping up with scans and appointments and even stay on the cancer medications that have caused the changes in their bodies.
It’s also important to acknowledge the full range of options as patients begin to renegotiate sexuality, including changing sexual routines or foregoing sex altogether. Katie Mortimer, a patient in her early 20s who was diagnosed with Acute Myeloid Leukaemia in 2022, recently wrote about her decision to become celibate. Although she’d been dating at the time of her diagnosis, she soon told her partner the relationship was off. Now, after a year of grueling treatments, she writes that she’s continued to be celibate. “At the end of the day,” writes Katie, “it’s my life, and celibacy feels right to me for now.”
Mortimer’s essay is a standout in its authenticity. But really, how can we expect to navigate cancer care unless we are, too?
“In cancer circles,” says Lindsay, “I sometimes feel pressure to be grateful and look on the bright side. But sometimes I don’t feel like looking at the glass as half full. When I make space for my authentic feelings, I have more room to address the challenges that I encounter in my breast cancer journey.”
After all, it isn’t just our bodies that change with cancer. There’s another metamorphosis, one we almost never talk about. The experience of cancer changes our relationship with time, aging and even the arc of life that we imagine for ourselves. I realize now that I went chasing after my mojo because I needed to feel alive again – not as a younger version of myself, but as a different, more intentional, surviving me.
It strikes me that a lot of us are going through a transformation after these three long years. Cancer or not, we are all a great deal older than we were back in 2019. There’s a new and precious feeling to all the ordinary moments that the virus took from us. Our quality of life may well hinge on how we understand and value these moments with the people we love.