‘You Don’t Trust Your Body Anymore’: How Breast Cancer Warps Survivors’ Relationship With Sex

For the most commonly diagnosed cancer in the world, there’s still a lot of hushed whispers around breast cancer. Beyond diagnosis, surgery, and treatment, breast cancer can metastasise itself in unexpected ways — changing relationships with sex, partners, body image, and identity. 

While one in eight Canadian women are at risk of the disease, the squirmy intimate details of life with and after breast cancer remain taboo — a sentiment survivor Rebecca Angus knows all too well.

Going through menopause in her 30s after battling breast cancer was something Rebecca never saw coming. One moment she was weaning off breastfeeding, and the next, after a chat with her GP and an ultrasound, mammogram and biopsy later, she was diagnosed with breast cancer. 

“Within 24 hours my GP was on the phone telling me I had breast cancer,” Angus tells Refinery29 Australia over the phone. “My son was probably 10, 11 months old. After that surgery, I had his first birthday with a drain in my back.”

Three years on (and chemotherapy, radiation treatment, neoadjuvant treatment, and participation in a free drug program later), Angus is now on ovarian suppression medication for at least five years, and tamoxifen for 10. 

“The main thing that people say to me is, ‘Oh, you're alright now, you're fine.’ Well no, I'm not fine. These things are... long-lasting,” says Angus. “I'm in medically-induced menopause in my 30s.”

“A lot of my peers are not going through this experience, and they're still extending on their families, so it was very challenging to get such advice. The only person I could ask was my mum.”

Sydney-based medical oncologist Professor Fran Boyle explains that many patients are pushed into early menopause because of chemotherapy. “It's often very abrupt instead of drifting gently into it in their 50s. That can have effects on libido, vaginal dryness, energy, sleep and hot flushes. Now that's not to say that ordinary menopausal women don't have those symptoms, because they do, but they often don't happen so suddenly or at such a young age.”

Despite these well-documented effects, there’s a lack of communication about management for these symptoms that impact a person's sex life. Professor Boyle says this hesitation comes from both sides, that both patients and doctors don’t feel completely comfortable talking about intimate subjects.

“Doctors are quite good at asking about problems they can fix, [like] pain or nausea or blood counts. But when somebody says, 'I've lost my libido,' most doctors would go, 'right, I don't really know how to fix that.' It's because these things don't have easy solutions.”

Boyle tells me about a new breast cancer patient she saw just before our conversation, who made the observation about the uncomfortableness that comes with disclosing her pain. “She said, 'if it was my back hurting I could just say I have back pain. Do I really want to say I have vaginal pain?’” 

Tangibility when it comes to pain — both mentally and physically — validates experience. In turn, invisible illness carries another load of baggage with it. 

“In the beginning, there's this sense of loss of self,” explains Angus. “It was a huge shock, I really didn't think I was going to get breast cancer. It really just wasn't on my radar. It took us a very long time to get our heads around it and what that would mean for our family, my life and my fertility long-term.”

“I also think that you don't trust your body either anymore,” she says with effort. “But I think personally, you really don't like the person you've become. You lose your hair, I didn't want anyone to take photos of me — at all. I just wanted to deal with this in the privacy of my home. I think it takes a long time to get confidence back and I had to go back to work with no hair so I had to accept what happened to me and learn how to talk about it. I couldn't hide from it. You have to learn how to be kind to yourself.” 

Though surgery options and their effects vary from patient to patient, physical changes — everything from double mastectomies to changes in body hair — can have profound impacts on body image.

Professor Boyle notes that changes in distribution of hair isn’t just about hair loss, but can lead to hair growth in unexpected places. “If you go from being pre-menopausal to post-menopausal suddenly, you may find you have more hair on your face,” she says. "A woman I spoke to said she felt more masculine, that she had more hair on her face, her voice was deeper, she felt much less feminine after her treatment. That speaks to people's sense of gender identity in the first place.” 

The change in gender presentation is not the only form of identity impacted; identities spawned from being a parent or from a career title are often lost or jumbled too. “It’s almost like, 'who am I in the midst of all this chaos?’” explains Professor Boyle.

Unsurprisingly, this manifests in one’s sex life too. It’s something that Angus heard about less in doctors’ rooms, but in online forums with women in similar positions. 

“I did feel like there was a sense of loss of my sexuality. In the beginning, it's something you don't really want to explore. You're feeling pretty terrible, you're fatigued, and you don't look very good. There's that sense of, 'is my husband still going to be attracted to the person that I was before I had breast cancer?'. You're quite mindful and fearful, everybody has sexual needs and you want to make sure you can meet your partner's needs as well. When you're sick and fatigued, you're just not really feeling in the mood,” she explains.

“Feeling reassured by my partner is definitely important,” Angus says when asked about what helped her and her partner connect sexually. “[And using] vaginal lubricants and so forth too.” 

Professor Boyle’s advice for partners providing support is to focus on communication. “I think someone who is able to listen to her concerns, not necessarily feeling the need to jump in and fix everything is key. [Someone who is] open to being patient and being experimental, willing to try something different. It's important to find time for intimacy, even if that doesn't mean having sex.”

Angus hopes that one day there’s more support for partners of those with a cancer diagnosis. “There's not a lot of focus on partners of those that have cancer. It would be wonderful if one day there was more support in that area.”

While returning to ‘normal’ life pre-diagnosis may not be realistically in reach, it’s about making life more manageable. Professor Boyle notes that life has curveballs anyway, regardless of cancer. “Couples going through menopause are going to have to have the same experience at some point [as well]. There are ways around many of these difficulties but [sex] probably won't be as spontaneous as it once was before. Having sex might require a bit more preparation and forethought, but that's the case when you have a small child too,” says Boyle.

“Seeing a psychologist, a sexual therapist, [or] a physiotherapist because pelvic floor problems can exacerbate these issues [can help]. A multidisciplinary approach is probably more important than running out for a [prescription cream].”

Angus agrees — she mentions how important mental health support is several times throughout our call. “Getting mental health support throughout the treatment is a definite must… it saved my life. Getting in touch with support groups, talking to your breast care nurse, being confident enough to advocate for yourself as a patient and to raise these difficult issues without feeling shameful. At the end of the day, it impacts our quality of life and our sexual health and our relationships with our partners.”

Dark days are aplenty, but Professor Boyle is hopeful. “Like other changes that happen in women's bodies, if you accept them and work with them, then a solution can be found. Keep plodding away at it, don't give up,” she imparts to any breast cancer patients reading this.

“One thing that gets better with menopause is migraines, and the fear of pregnancy goes away. I can say this because I'm currently going through menopause,” she laughs. “There will be some interesting silver linings that may not be obvious at first.”