When Alice Hopwood was diagnosed with breast cancer in 2012, she was terrified. “I was frightened for my children, because at that stage my youngest was 15,” says the single mother-of-four.
Over the next 12 months, she endured a harrowing treatment regimen of surgery, chemotherapy, and radiation therapy.
Side effects of cancer treatment are par for the course. Hopwood, for example, has nerve damage and lymphedema (a collection of fluid that causes swelling) in her left arm.
But a side effect that is rarely discussed is sexual dysfunction. Chemotherapy can cause the onset of menopause and menopausal-like symptoms: vaginal atrophy (where the vaginal wall thins), vaginal dryness, loss of libido and fatigue.
After her treatment, Hopwood battled with severe vaginal dryness, a common side effect that can cause painful intercourse and bleeding. “It doesn’t just affect your sex life. It affects every day life – it’s like walking around with sandpaper in your vagina,” she says.
Emotional side effects are common too. “Many women will tell us that their body changes so much that they cannot even look at themselves in the mirror, or they have a fear that their partner will find them disgusting,” says Kirsten Pilatti, Director of Programs and Services at Breast Cancer Network Australia (BCNA).
BCNA surveyed 10,000 men and women who had been treated for breast cancer and found that one quarter of respondents said their medical team had never spoken to them about the sexual side effects of their treatment.
Despite their frequency, health professionals often fail to raise the possible sexual side effects of breast cancer treatment to patients in their care. In 2017, BCNA surveyed 10,000 men and women who had been treated for breast cancer and found that one quarter of respondents said their medical team had never spoken to them about the sexual side effects of their treatment.
“I think it’s a societal issue. Even in a room full of people who have experienced breast cancer, unless I bring up sexual wellbeing, they won’t bring it up themselves – unless they’re a pretty brave person,” says Pilatti. “[But] the more we talk about it…the better the outcome for women post their treatment.”
Strict cultural taboos can make these conversations even more difficult in CALD communities, she says. “Our focus needs to be on encouraging health professionals to start having those conversations with patients, but also on trying to provide safe and cultural relevant spaces for people to talk.”
One of those safe spaces is , a memorably titled, closed online group run by BCNA. “It’s a very safe community where people can anonymously, or with their name, talk about and ask questions about their experiences,” says Pilatti
It’s a member-driven forum offering peer-to-peer support. Hopwood is one of the group’s facilitators. “We’re so grateful for women like Alice who are brave in sharing their experiences to allow other people to talk about things,” says Pilatti.
In March, a breast care nurse who specialises in sexual wellbeing will join the group for a one-hour Q&A session. “We’re going to encourage members to come and ask the questions they don’t want to ask when they’re face-to-face with their health care professional.”
People come and go from the forum depending on what stage they are at in their treatment, says Pilatti. Early on, the focus is often on dealing with the shock of diagnosis and then the day-to-day issues of treatment.
It was not through my oncologist that I learned what was going on with my vagina, it was talking online with the BCNA group.
Sexual side effects often emerge in the post-treatment phase, a period known as survivorship. “It’s when the health care system is no longer there for you every day and you’re not seeing your treating team regularly,” she says. “The family hands back the vacuum cleaner, and says ‘Mum, we’ve been cleaning the house for a year, now you’ve finished your treatment, you must be better’, and the food stops, and your colleagues expect you to return to the person you were – but the reality is you never return to the person you were.”
BCNA aims to provide women struggling with this stage of their breast cancer experience with emotional support and practical advice, whether it’s a referral to a local psychologist or a tip about where to find the best moisturising lubricant.
The group is a valuable resource for women coping with the after-effects of cancer treatment. “It was not through my oncologist that I learned what was going on with my vagina, it was talking online with the BCNA group,” says Hopwood, who took what she discovered in the forum back to her GP, who referred her to a gynaecologist, who prescribed her medication that her oncologist later told her she couldn’t take.
Recognising that a lack of education on the topic exists in the medical world, BCNA has created a sexual wellbeing resource for health professionals to distribute among breast cancer patients. “Even if they’re feeling uncomfortable talking about it, if they do nothing else but deliver a resource into a woman’s hands that can link them to an organisation like ours that is brave enough and strong enough to talk about these issues, that will be one more woman helped.”
Five years after her diagnosis, Hopwood says she has worked through the debilitating sexual side effects of her treatment and now has a healthy sex life. “Without BCNA, I would have thought it was just another problem with my health.”
Watch Insight's episode 'Cancer Sucks' on SBS On Demand:
