How breast cancer treatment triggers early menopause — and what can be done
Cancer treatment in their 30s brought on acute and severe symptoms of menopause for these women. Is there a better way to heal them during their child-bearing years? Researchers think so.
In the middle of the night Sali Sasi would wake in a pool of sweat, feeling as if hundreds of insects were crawling under her skin. She had debilitating joint pain, hot flushes and brain fog. At just 27, Sasi was experiencing the torturous symptoms of menopause – brought on by chemotherapy following a diagnosis of stage two breast cancer, and a course of adjuvant therapy to suppress her body’s oestrogen.
“I had no idea what was happening to me,” recalls Sasi, who’s now 45. She went through something no one was talking about, at a time when breast cancer survival rates were lower and the side effects of treatments, like early menopause, were given little consideration. “There’s not much information about it now, and there was even less then,” she says. “At least you can now jump onto Instagram and hear about the experiences of other women going through it. None of that existed when I was diagnosed – I went in blind.” The experience was so difficult, she says she thought seriously about stopping the treatment that was designed to save her life.
Today, there is more talk – and some groundbreaking research – but it’s still a fraught and highly complex proposition for young patients. Their breast cancer diagnosis is devastating even before they consider the side effects of the most common treatments. Chemotherapy and radiation therapy can cause infertility and plunge women aged under 40 into what is clinically known as premature ovarian insufficiency (POI), or, for those aged 40-45, into early menopause.
For some, this will be harrowing but temporary. For most, it will bring into sharp relief questions about fertility that they’d never before confronted. Many women are urged to freeze their eggs in anticipation of what may happen. Further complicating the picture is the side effects of drugs such as Tamoxifen, a selective estrogen receptor modulator (SERM), which are commonly recommended to be taken daily for between five and 10 years after the initial treatment. Tamoxifen and other adjuvant therapies work by blocking the effects of estrogen, a hormone that can stimulate breast cancer cell growth. Users report severe and intense menopausal symptoms, but the usual response – HRT (hormone replacement therapy) and MHt (menopausal hormone therapy) – are firmly off the table because they contain estrogen, the very hormone causing the problem. Caught in this medication trap, young women report that their bodies feel old before their time, while the potential loss of fertility brings anguish as it dawns on them that the treatment protecting them from cancer will limit their ability to have children.
I have first hand-experience of this. Diagnosed with breast cancer nine years ago, when I was 32 and on the verge of beginning a family of my own, I underwent a mastectomy and reconstruction surgery, months of chemotherapy and radiation, and spent a year on Tamoxifen, which brought about powerful menopause-like symptoms and, over time, could have eventually led me into menopause. In the wake of my initial treatment, the idea of gratitude came up a lot in conversation with others; I felt an expectation from many to be grateful to be alive, but there was zero mention of the despair that you may not be able to have children, losing the parts of your body that made you feel like a woman, and feeling old before your time.
In the time since I first entered an oncologist’s office almost a decade ago, I have seen a profound change in care – driven by breast cancer patients finding their voices about this, and bolstered by a coalition of compassionate oncologists, hematologists and researchers who have listened and are taking action. The heartening increase in survival rates (in 2014-2018 breast cancer patients had a 92 per cent five-year survival rate, up from 77 per cent in 1989-1993) has brought a new focus to quality of life after breast cancer treatment – particularly for young women whose diagnosis came during, or even before, their child-bearing years.
According to the latest Cancer Data in Australia report by the Australian Institute of Health and Welfare, three women under 40 will be diagnosed with breast cancer every day, which equates to more than 1000 a year. About two-thirds will experience menopausal symptoms as a side effect of their treatment, and about seven per cent of those women will not have started or completed a family. Young women are also more likely to be diagnosed with aggressive cancers, which means, in turn, their treatment is more aggressive.
Sydney woman Jen Byles was 37 when she was diagnosed with stage four breast cancer in 2022 – trauma that was compounded by intense menopausal symptoms brought on by her treatment. “I felt like I was going crazy. No one tells you how hormones affect your mental capacity. It’s not spoken about, which is the hardest thing,” says Byles, whose cancer remains stable after recent surgery and radiation therapy. “It’s very hard to find the specific information for a young woman.”
In the wake of her diagnosis, Byles founded a local Walk And Talk Cancer group, which invites women with breast cancer to a monthly walk on Sydney’s northern beaches. It ends with a coffee and a chat, where women can swap information and discuss treatment options. Byles says hers is a grassroots initiative that aims to fill what is still a gap in support for younger women with breast cancer. “If we don’t have the answers, I thought we can at least hear other women’s viewpoints,” says Byles. “You don’t want to feel alone, that you’re the only one having these thoughts and feelings.”
It’s in local support groups like these that women can process their concerns about fertility, free from the guilt at having feelings besides gratitude at remaining alive. Next, they turn to their doctors.
Dr Rachel Dear, an oncologist at the Kinghorn Cancer Centre in Sydney, understands the challenges of the women in Byles’ group. She says that while chemotherapy and endocrine therapy save lives, women are giving up a lot to make it to their next birthday. Treatments like Tamoxifen (which blocks the action of oestrogen) or aromatase inhibitors (which block the production of oestrogen) work, Dear says, but they “can also be a detriment to a woman’s quality of life. I deal with it every day in my clinic, it’s the topic of most of my consultations”. Dear explains that being suddenly thrust into medically-induced menopause means the effects, which usually would occur gradually if experienced in midlife, are immediate and acute. “Your body doesn’t have time to adjust; it’s everything from hot flushes to vaginal dryness, painful intercourse, poor memory and aching joints,” Dear says. “There are so many challenging issues for women balancing the massive effects of lower oestrogen levels, or blocking oestrogen to save their life. It’s very much a balancing act between the benefits and side effects of treatment.”
Dear speaks positively about the promise of the LoTam trial underway in the US, which examines whether all patients need to be on the standard 20mg dose of Tamoxifen or if a lower dose could be appropriate. “There’s data that a lower dose is just as effective, and it might be more tolerable for women with low-risk, early breast cancer,” she says.
Clinical Associate Professor Amanda Vincent, lead endocrinologist in the Menopause, Early Menopause and Menopause Oncology clinics at Monash Health in Victoria, told the Australian Senate’s inquiry into menopause and perimenopause in November last year that the biggest group of women to come through the clinic are those in menopause brought on by cancer treatment. She also spoke of a lack of awareness around early menopause. “One of our patients says she feels that she went from 39 to 80 – the symptoms made her feel like she related more to her grandmother than her peers, and this dissociation is a very common feeling,” says Vincent.
Vincent acknowledges, too, that women going through medically induced menopause have particular needs. “We know there is increased anxiety and depression in women with POI [premature ovarian insufficiency], especially in medically induced POI compared to when it occurs spontaneously.”
Dear has started to prescribe a new drug called fezolinetant, a non-hormonal treatment, to manage menopause symptoms in her cancer patients. Vincent agrees it shows promising outcomes. “We need some more data, specifically in women with breast cancer, but certainly in other populations of women who cannot or choose not to use HRT,” Vincent says.
“The other thing that’s a huge problem, which people don’t talk about, is sexual function and urogenital symptoms. Women will suffer in silence, and it can cause personal distress,” she says.
But it’s also important to consider how far the conversation has progressed.
When an international team led by Dr Ann Partridge, Professor of Medicine at Harvard Medical School, embarked on a pioneering study in 2016 that focused on young women undergoing breast cancer treatment, there were concerns they wouldn’t find enough women to participate – yet 518 women signed up. “Eligible women were 42 years of age or younger; had stage I, II or III disease; had received adjuvant endocrine therapy for 18 to 30 months; and desired pregnancy,” explains the study, published in the New England Journal of Medicine in 2023. The results of the trial, named POSITIVE, proved a landmark in its field, showing it was safe to interrupt endocrine therapy to have a baby. “The concern was that we’ve spent a lot of time turning off oestrogen, and the hormones of pregnancy might be like throwing gasoline on the embers and increase the risk of recurrence,” Partridge tells this magazine. “Retrospective studies looked like it was safe, but we were still worried.”
She says her clinical focus on the needs of young patients with breast cancer meant she appreciated how important it was for her patients to have children – and yet there was scepticism when she set out to do the study almost ten years ago. “People told us it would never work. This is a real partnership with patients, doctors and the research community. Women wanted to be monitored because they were worried, too. Young women with breast cancer are a niche population, but once word got out, the women found me. They realised there was a way forward.”
Partridge describes the clinical conundrum addressed by the study: “For many patients, endocrine therapy is recommended for at least five years following treatment to further inhibit the chances of recurrence. Women were subjected to it right through their fertile years. The POSITIVE trial was designed to try to learn more, to manage that.”
Partridge acknowledges that doctors are more concerned with keeping patients alive than with their fertility, but the next stage of cancer patient care is survivorship. “As we’ve gotten better at curing breast cancer, we can shift more into research efforts to try to support women in the aftermath and help them manage the consequences of therapy,” she says.
“Younger patients have a high risk of recurrence; there’s been a real fear of tinkering with treatments because it’s life-and-death. Women not only want to survive cancer, but to thrive. Telling them they’re cured but they can’t have this very important thing [a chance to have children] feels incompatible. We are getting better at treating the disease. We used to treat breast cancer as one disease, now it’s ‘What type of breast cancer do you have? Which targeted therapy can we give you?’”
Back in Australia, Associate Professor Cleola Anderiesz, CEO of the National Breast Cancer Foundation, says she has been encouraged by a steady improvement in the way the medical community provides information for younger women with breast cancer.
Last year the Foundation announced it would fund a three-year project, led by Associate Professor Peter Simpson from the University of Queensland, to study tumour samples from women under 40, in order to understand how breast cancer occurs in younger women. Another project supported by the Foundation is being led by Associate Professor Karla Hutt from Monash University and is looking at whether new targeted breast cancer treatments for BRCA1/2 gene carriers (who have a higher chance of developing ovarian or breast cancer) impair fertility.
Anderiesz believes these two studies could help inform and change how young women are treated. “Professor Simpson’s work in understanding why breast cancer happens in young women increases our understanding of this disease at a cellular level, which gives us far more information on how we may prevent and treat this disease,” she says. “Associate Professor Hutt’s research is looking at the impact of targeted treatment on ovarian health, which is providing critical knowledge on the impact of newer treatments.”
Haematologist Professor Nada Hamad, who works with Dear at the Kinghorn Cancer Centre, has published three papers looking at issues of menstruation, fertility, pregnancy and sexual dysfunction in young women with cancer over the past three years. She says the improvement in both resources for young women with breast cancer and the advancement in research has been a movement largely fed and led by the patients themselves.
“The crux of the problem is systemic implicit bias,” she says. “It’s not intentional, it’s just the way the world has been designed. [Doctors] are not asking about reproductive health – which includes menstruation, fertility, contraceptives and future family aspirations – as routine, so I asked the question, ‘Why? What is stopping us from asking these questions?’
“The questions women were interested in were not what we were interested in as researchers. This work is not usually celebrated or valued by the scientific community – it’s not a new drug or treatment. I’ve had a hard time pushing for support for it, but all the women were extremely grateful for the ability to talk about the work and their experiences. They wanted their experiences to mean something.”
Hamad says in the course of her research and practice, she realised doctors had not been given the tools to understand the intricacies of the reproductive system. “We are asked to contextualise a cancer diagnosis and treatment with no education on the impact it can have on reproductive health, or vice versa,” she says.
“There is nothing. I didn’t know about perimenopause until I went through it. It drove me insane that as a physician there was no reference kit or toolbox to read about what was happening to me physically, and I started to think about all these patients having terrible symptoms and we say, ‘It’s just chemotherapy’ and ‘Give it time’ when that may not have been the case. The biggest message here is the oncology community is increasingly realising we can better support our patients, we can create studies and drive real evidence to support taking better care of them in the long run. It’s about listening to patients and what’s important to them.”
Sasi, an e-commerce pioneer and restaurant owner, had one child before she was diagnosed – a boy, Simun, who is now 19. She was offered egg freezing before chemotherapy, but didn’t take it up, and then underwent adjuvant treatment post-chemo (including the estrogen-suppressing exemestane) to prevent a recurrence of her cancer. After six years of consequent menopause symptoms, she was warned that it was unlikely she would fall pregnant again. But in 2016 she gave birth to another son, Harvey, and 16 months later a third boy, Harry. “My hopes of falling pregnant were so low, I didn’t think it would happen. I was absolutely shocked,” says Sasi, who had a hysterectomy at 41.
Community manager Jen Byles was preparing to undergo IVF when her diagnosis changed from stage three to four, taking away the possibility of children. “It was one of those things where the carpet was ripped from underneath me – I still had those hopes and dreams of a family,” she says. “I remember the first day of the [hormone therapy medication] Zoladex needle, it was a literal stab in the guts, stopping what could be. I brought that grief up with my oncologist – the loss of not getting to have what you thought you would. I asked if there was any chance we could stop treatment [in order to undergo fertility treatment] and the response was no, because of the nature of stage four cancer they don’t know what will happen if I’m taken off these drugs. That’s the uncertainty that comes with living with this.”
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