If the menopause movement is to be truly revolutionary, it needs to include women with cancer – iNews

Theres a menopause revolution afoot and the three letters on everyones lips from Davina McCall to Sajid Javid are H, R, T. But one group missing from many of these discussions is cancer patients and, for many of them, hormone replacement therapy isnt a straightforward option. If this powerful patient movement is to be truly revolutionary, it must also find a way to include those going through the menopause alongside cancer.

Amy Meadows, a 48-year-old campaigns manager, tells me she feels completely excluded by the focus on HRT within the mainstream menopause discussion. A year ago, she was diagnosed with breast cancer after finding a lump. After undergoing surgery, chemotherapy and radiotherapy, Amy is now having hormone therapy a treatment that induces a chemical menopause, suppressing the bodys natural hormones to prevent oestrogen sensitive cancers like hers from spreading or recurring.

As Amys oncologist warned her, this type of medical menopause can be a more brutal experience than going through perimenopause naturally, because of the sudden drop in oestrogen levels. The nature of Amys cancer also means that HRT isnt an option to ease her menopausal symptoms of hot flushes, night sweats and insomnia. I do really welcome the extra profile being given to menopause, but I feel excluded from the fast-growing club of vocal HRT advocates, she says.

Almost all my friends are on some form of HRT and reporting the positive impacts, both in terms of short-term symptom relief but also the longer-term protective impact against dementia, diabetes, osteoporosis and cardiovascular disease. Some of these potential risks are the same very ones that I am now at greater risk of because of my cancer treatment, so I also worry that Im missing out on those benefits, Amy adds.

Menopause after cancer treatment doesnt just affect those with breast and gynaecological cancers. It can be brought on by the disease itself, or as a result of surgical removal of the ovaries, hormone therapy, chemo or radiotherapy. For example, radiotherapy to treat cancers in the pelvic area like bowel cancer can cause either temporary or permanent damage to the ovaries, inducing a medical menopause. HRT usually isnt recommended for anyone with a hormone-related cancer, most notably oestrogen receptor (ER) positive breast cancers, although topical oestrogen can be used to treat symptoms like vaginal dryness.

Even for those cancer patients who can take HRT, theres a much bigger conversation that needs to take place. Charity Trekstock, which supports young adults with cancer across the UK, runs a six-week Navigating Menopause programme and have found that 44 per cent of participants hadnt been told about early menopause by their oncology teams. 42 per cent of those who took part in the programme said they didnt get support when they sought help with their symptoms, and 88 per cent found their last doctors appointment on the subject unhelpful.

For young cancer patients, who may be going through menopause a decade or two earlier than they would have done naturally, its also a seriously isolating experience. Eighty per cent of people told us theyd never met another young person whod been through cancer and the menopause, so our programme isnt just about giving people the information and leaving them to it, its about sharing stories, empowering one another, and creating communities so people feel less alone, says Trekstocks Health Programmes and Engagement Lead Jemima Reynolds, who used her background in healthcare to co-create the programme alongside 43-year-old yoga teacher, menopause guide and patient advocate Dani Binnington.

A quality standard published by the National Institute of Health and Care Excellence (NICE) states that patients who are likely to go through menopause as a result of medical or surgical treatment should be made aware of this long-term after effect and its symptoms. In reality though, Jemima adds: Were finding time and time again that people arent told and, [even if they are told at their initial diagnosis] it isnt revisited.

Dani went through a temporary menopause during treatment for breast cancer in her 30s but at the time had no idea thats what it was. My periods stopped for a while when I was going through chemo, but I just thought all my symptoms were cancer or treatment related. I was poorly educated in terms of my biology and it wasnt until three years ago that I realised Id been in the menopause, she explains.

When Dani later found out she was a carrier of the BRCA gene mutation which increases the risk of both breast and ovarian cancers she made the decision to have a double mastectomy and an oophorectomy (surgery to remove her ovaries), with the latter putting her into an immediate surgical menopause.

This time, though, she was more clued up. I actually cancelled my oophorectomy twice because my appointment with the menopause specialist hadnt come through yet, and I knew I needed to speak to them before anyone touched my ovaries. This was six years after my cancer diagnosis and Id learned so much that I was a really good advocate for myself; I knew about my choices and what my options were, she explains.

Dani did opt for HRT, based on the fact she was more than five years on from her diagnosis, had already had a double mastectomy and had a type of breast cancer that wasnt hormonally driven. But she and Jemima are clear that cancer patients, regardless of their individual risks and treatment choices, need a far more nuanced conversation about the impact of cancer and the menopause on their lives. Theyre coping with the emotional trauma of going through cancer, with cancer-related fatigue, with body image changes, with all these costs to their mental and physical health, which are compounded by menopause. The onus shouldnt be on them to do the research and find out whats going on like Dani did. We need to equip them with the tools to not just survive cancer but thrive, Jemima says.

For this group that conversation must move beyond HRT and focus on overall health and wellbeing. We need some recognition that HRT is not the silver bullet everyone thinks it is. There are medical and non-medical alternatives to tackle menopausal symptoms, and these all need to be coupled with lifestyle factors like nutrition and exercise, Jemima says.

Weight-bearing exercise, she adds, is hugely important for post-menopausal bone health, as well as improving mood and cancer-related fatigue, both of which are often made worse by the menopause. Similarly, antidepressants which arent generally considered a first-line treatment for menopausal symptoms can be a great alternative to HRT when it comes to tackling not only mood changes but also physical symptoms like hot flushes.

Essentially, Dani adds, we need an acknowledgement that mainstream menopause advice doesnt necessarily apply to everyone. Much of this change will come from greater training and awareness for healthcare professionals within oncology and, in this sense, she says, its not too dissimilar to the mainstream menopause conversation. Theres a campaign for more GPs to go on specialist menopause courses; we also need more training for cancer nurses and oncologists. Its just an extension of the wider conversation thats going on anyway.

For patients too, there needs to be a much broader, more nuanced conversation about how menopause affects different people young and old, with and without cancer, on and off HRT. Menopause can be an isolating enough journey without being made to feel like an outsider, and this revolution must leave no one behind.

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If the menopause movement is to be truly revolutionary, it needs to include women with cancer - iNews