SEXUAL HEALING

It’s not well known that after breast cancer treatment, many women will experience issues with sexual health and intimacy. Why does this happen and what can be done to improve things?

One in seven women in Australia will hear the words “You’ve got breast cancer” catapulting them into a maelstrom of emotions, appointments, and treatments. It’s the most diagnosed women’s cancer in this country. With the focus on initial treatments, many are unaware another battle looms, one that’s often invisible.

There are many different types of breast cancer, however around 70 per cent of them are sensitive to the female sex hormone, oestrogen. Cells from these types of cancer have receptor sites that bind to oestrogen, which promotes their growth and spread. These cancers are known as oestrogen receptor positive cancers (or ERpositive cancers). This means the cancer cells flourish in an oestrogenrich environment. Cells from tumours are tested to see if they have these receptors. If so, medication, known as endocrine therapy or hormone blockers, may be given to prevent breast cancer recurrence. Hormone therapy works by lowering the amount of oestrogen in the body, or by blocking its ability to attach to breast cancer cells. While this medication is effective in reducing the risk in breast cancer recurrence, it can cause side effects. Taken for 5-10 years, the most common side effects include menopause-like symptoms such as decreased libido and vaginal dryness. While these symptoms can occur at any age, even older women in menopause or post menopause will likely experience a resurgence in menopausal symptoms.

Available as tablets and injections, the type of hormone-blocker prescribed will depend on a woman’s menopausal status and the likelihood of cancer recurrence. Some women will need a combination of treatments. Dr Lironne Wein, medical oncologist at Women’s Health Melbourne, a specialist gynaecology and fertility practice, says, “It’s good that we have this treatment option, but that comes with a whole range of side effects because you’re depriving not only the cancer cells of the oestrogen, but also all the healthy tissues as well.”

Oestrogen is important for bone and heart health, brain function and sexuality. Most doctors will discuss the side effects but the actual impact on a person’s day-to-day life might not be fully explored. “Patients should know they have the power to speak up and seek support. Practitioners also have a responsibility to bring up the issue and let women know it’s okay to talk about it,” she says.

Wein developed a special interest in the management of menopause after cancer after witnessing the experiences of her patients, leading her to believe there’s a need for increased awareness and management of these symptoms. Breast Care Journal reported in 2021 that patients on this type of medication had a significantly higher prevalence of sexual dysfunction, reduced quality of life and greater anxiety than other breast cancer survivors.

MENOPAUSAL SYMPTOMS

Common symptoms include hot flushes, night sweats and mood fluctuations. Sexual desire can reduce and vaginal dryness and shrinking (atrophy) can make intercourse feel painful. While these symptoms often happen gradually for most women in late middle age, for younger women on hormone blockers the changes can be abrupt and intense. Body aches can be widespread, and many have pain in their hands, hips, knees, and shoulders. How someone responds to the hormone blockers is individual and the severity of symptoms can differ. “Symptoms are generally worse in people who have ovarian function suppression [which can be hormone blocking injections, or even surgical removal of the ovaries] and as a young woman it can be more difficult to tolerate than the tablets alone,” says Wein.

Given the side effects, it’s not surprising that some women find sticking to the medication for so many years challenging. Those who do decide to stop, risk the chance of the breast cancer returning. Professor Prue Francis, Clinical Head of Breast Medical Oncology at the Peter McCallum Cancer Centre in Melbourne, says, “There’s definitely data that suggests that adherence is not 100%, particularly in younger women but the important thing is that there are various intensities of endocrine therapy that may be given. If they’re not taking hormone medication on a regular basis or stopping it earlier, then that does increase the risk of recurrence. So, if they’re having problems, I’d encourage them to reach out, so that we can try to adjust their therapy to make it more tolerable for them.”

Amy Duckworth was diagnosed with breast cancer at 38, takes a hormone blocker daily and has monthly injections. “I felt like I’d aged overnight. My body ached everywhere, the hot flushes were horrendous, and my sex drive totally disappeared.” Amy had a good sex life before she started the medication. “My partner worked away for two weeks and was home for one, so we’d have sex at least four or five times when he was home. Sex was enjoyable, it was a fun sex life, impulsive and spontaneous.” Their sex life began to deteriorate after the hormone blockers, and sex dwindled to once or twice when her partner was home. “It just wasn’t on my radar. It was painful and we’d have to interrupt things to get the lube out as well as being careful with positions as some caused more bleeding than others. It’s not spontaneous and the excitement’s gone,” she says.

Duckworth’s relationship subsequently broke up. “It’s not just the sex, it’s everything that’s part of that as

well, the intimacy and the affection, giving that to somebody else. That disappears thanks to the hormone blockers, and I didn’t realise how important that was.”

RECLAIMING INTIMACY

Isiah McKimmie, a couples’ therapist and sexologist, says, “Often in a relationship, sex is a way of feeling loved and connected.

“So, when someone doesn’t feel like having sex or isn’t able to have sex, their partner can feel that they’re not loved and connected to their partner in the same way.”

When McKimmie is working with couples she focuses on three key areas: physical and sexual intimacy; connection; and communication. “Sharing our innermost feelings and having our partner respond with understanding and empathy is really the heart of emotional intimacy and that’s essential for a relationship,” she says. Difficulties with sex in a relationship can have a flow-on effect. “We can have feelings of shame, like there’s something wrong with us because we’re struggling in this area, or we can’t get it right – which can impact our confidence. It can increase overall anxiety levels and can also lead to feelings of depression.”

Sexual wellbeing is so important that a recent article in Lancet Public Health has mooted it as being imperative to public health in that it is a marker of health equity and a meaningful population indicator of wellbeing. Wein believes a focus on sexuality needs to be broader than just the hormone blockers alone as there may be other factors that could be contributing to sexual difficulties.

“These women have been through a lot in terms of surgery and often body image changes, too,” she says.

Cancer survivor Duckworth describes this as two trains running on different tracks: a ‘physical train’ and a ‘mental and emotional train’. “Physically, I’ve got this vaginal dryness and zero sex drive, and mentally I’ve got this whole new body to deal with because my physical appearance has changed.” While there may be a sense of hopelessness around these physical and emotional changes, it’s important to know that there’s still much that can be done to help and support women confronting this.

Many women do experience emotional distress, particularly grief and loss. Javiera Dastres, senior psychologist at Sexual Health and Intimacy Psychological Services (SHIPS) in Melbourne, describes grief as a really challenging process that involves acknowledging what has been lost, re-adjusting to things being different and over time, beginning to explore who we are now. This might include redefining sex itself. She says, “If we believe that the only way to have sex is penetrative sex and that’s not possible, we can feel that we’ve failed or we’re not good enough. That narrow definition can really hurt us.”

SEX 2.0

With libido gone, sex can become a distant memory. McKimmie says, “We have this unrealistic expectation that sexual desire is spontaneous and that it will remain so throughout our lives. But that isn’t the reality. We don’t need to have that urge or feeling of desire before we engage with a partner sexually. We can engage and then enjoy what’s happening and want it to lead to the next step.”

Navigating a new sexual landscape and becoming more sexually confident requires a willingness to be vulnerable and can be especially daunting for women dating. McKimmie says it’s common for women to doubt themselves but it’s important to realise that sexy can come in different forms. For women who now must use lubricant she says, “We really need to do away with the shame that can come with using lubricant. We tend to think there’s something wrong with our body if we need to use it and that just isn’t the case.”

Many women may feel a reluctance or embarrassment to discuss sexual problems especially if they think it’s not something their doctor wants to talk about or isn’t forthcoming in bringing it up. Duckworth agrees: “It’s not openly talked about at all, that’s the hardest part. It wasn’t discussed as something that could impact my life, and it does.”

Professor Francis says medical professionals need to be well educated about the likely impact of these medications on their patients and stressed the importance of raising this complex issue even if they feel they don’t have all the solutions. “It’s important that patients do feel these are things they can bring up and feel comfortable to talk about.”

An recent article in the Polish NOWOTWORY Journal of Oncology reveals that patients, family members and even medical staff feel too embarrassed to talk about sexual difficulties or concerns. Dastres says, “Somehow our sexual function is deprioritised when we’re looking at medical treatment and medical care. Maybe the embarrassment people experience highlights just how much medical professionals need to be more aware of and prioritise conversations around sex and sexual functioning.”

For women feeling hesitant to talk about it, Dastres suggests the first step is finding a support network, to know they are not alone and what they are experiencing is normal. The next step is learning and reading about sexuality, including the language and words associated with it. She says, “We need to have those words to express how we feel and what we need, and we first have to learn them. It’s important for women to give themselves permission to care about their sexual health and to prioritise it for themselves.”

Duckworth started her Facebook page ‘Kick It in The Tits’ to raise awareness about breast cancer and speak up about the reality of treatments. “There wasn’t a place that was really honest and raw about the experience. It’s been really humbling to know that it’s helped people. I can’t sit there and do nothing which is why I share what I do. Because if it does change one person’s life for the better, then I’m happy with that.”

“I’VE GOT VAGINAL DRYNESS, ZERO SEX DRIVE AND A WHOLE NEW BODY TO DEAL WITH.” AMY DUCKWORTH