What no one tells you about menopause after cancer

The conversation around menopause has grown over the last 10 years, and with it has come more understanding and support for women going through hormonal change. However, women who experience menopause brought on by cancer treatment remain an almost invisible group, suffering from more extreme symptoms than those going through natural menopause, and often with very little warning, guidance, or help to navigate those changes.

Dani Binnington is the founder of the non-profit organisation Menopause And Cancer, which is dedicated to supporting and educating women about their choices. She is also the host of the world’s sole Menopause and Cancer podcast, and author of the Amazon bestseller, Navigating Menopause After Cancer. Following her own cancer diagnosis, treatment, and subsequent, sudden shift into early menopause in her thirties, she found herself devoid, not only of support, but answers, leading her to search for her own. It’s an ongoing journey, which now sees her standing as a passionate advocate for women navigating menopause after cancer.

She spoke to us about her mission, and the information that women and their loved ones simply aren’t getting, when it comes to medical menopause.

The medical menopause numbers

“Menopause after cancer is a totally different ball game”, says Dani. Having conducted research in collaboration with University College London Hospital, she has found that 90.4% of women who experienced cancer treatment entered menopause as a direct result, but 77% said that they received no or inadequate help managing symptoms, and 92% felt isolated in their experiences.

Dani also cites further research, which shows some eye-opening statistics, not least that 40% of women under 40, and 70% to 90% of women over 40 enter permanent menopause as a result of their cancer treatment. While providing appropriate care shouldn’t be a matter of volume, with that number of women entering a space that no one warns them about, and where there is little or no meaningful guidance, it begs the question – how can we help?

The difference between menopause and menopause after cancer

One of the great misunderstandings about menopause resulting from cancer treatment is the idea that it’s the same as going into menopause naturally.

Dani says: “Many people don’t even know that cancer treatments can make women menopausal. That includes women going into cancer treatment – there’s simply no warning about what may happen. Chemotherapy, radiotherapy to the pelvis, surgery to remove the ovaries, and anti hormone therapy – the whole idea behind cancer treatment is that it effectively makes you menopausal to help treat cancer. The science is there, but no one is talking about it, acknowledging that this can be a very severe menopause experience, or providing any support.”

Furthermore, the experience itself is very different. Where ‘natural’ menopause might gradually take place over a 10 to 20 year period, some women find themselves thrown into it overnight, depending on the treatment that they have. The result is not only a shock to the system, but often much more severe symptoms than you might otherwise expect. That’s compounded by a lack of warning, so many women aren’t even aware of what’s happening to them.

Dani says: “It’s a much more extreme experience of menopause. People can go into it very quickly – drugs can switch hormones off in a week, while surgery can make it happen in a day, so symptoms are often more severe. I have had many people tell me it felt worse than the cancer treatment itself, because they were thrown into it. The UK is leading in the general menopause conversation, but when all those people were campaigning outside parliament to get menopause on the agenda, I was planning for my own surgery to remove my ovaries. I am a classic person pushed into menopause from a Thursday to a Friday, and when I realised it was going to happen to me I thought I had better ask the doctors about it, but I either got conflicting advice or none at all.”

That’s not including the questions, concerns, and conversations for women who still might be considering starting a family. The other challenge is that the treatment options for menopause after cancer are not always as straightforward as they might otherwise be.

“People don’t know that cancer patients have different treatment options to healthy menopausal women. Vaginal oestrogen, HRT – all those things come with extra consideration for cancer survivors. As a result of lacking awareness, often amongst doctors as well, many people think that putting up with symptoms is the only option they have. They are discouraged by the lack of support from their doctors, so they don’t ask again, and they suffer in silence, not knowing who to turn to.”

How to help women navigate menopause after cancer

So, with all of that in mind, what would help women experiencing menopause after cancer? Dani is keen to highlight that the conversation has to stay open – people are individuals and different things work for different people. That said, there are a couple of things that she sees as universally helpful:

1) Helping women to prepare for menopause

Part of the problem for women is that they simply aren’t given enough information to understand what menopause resulting from cancer treatment might look and feel like, so it’s bewildering when symptoms occur and they don’t know what’s happening.

Dani says: “We think help needs to start with adequate preparation. Lots of people tell us that when they asked about symptoms they were experiencing, no one told them it was the menopause, and if they had known, it would have been helpful. I have women come to me in their twenties telling me they didn’t know that what they were experiencing was menopause, and what they were feeling was largely dismissed when they sought help. Adequate acknowledgement is really important – knowing what you’re feeling is real, and that sometimes it is more severe than active cancer treatment. That conversation needs normalising.”

2) Providing suitable support for women

There’s still a lot of ongoing research that is being done, and needs to be done, to fully understand menopause, especially when it results from cancer treatment. That said, there is enough knowledge out there to give women better support, both medical and holistic. Treating menopause resulting from cancer treatment is different to treating the consequences of natural menopause, and it’s important women are given help. Pointing women in the right direction instead of shrugging shoulders, and providing considered support journeys is the crucial next step.

Dani says: “The reality is that most people will need specialist advice to figure out what their options are. That’s why we’re really campaigning to look at hormonal health in cancer survivorship. For example, depending on your medical history, is local vaginal oestrogen a possibility? Is general hormone replacement therapy a possibility? Often people are discounted automatically because of cancer, but the type of cancer means that some people will qualify for these treatments – it’s simply not discussed so they can’t access it. Understanding what you can have safely is essential. We speak to lots of bowel cancer patients who are eligible for HRT for example, but it takes them two years to start it because no one talks about it.”

3) Expectation management and empowerment

Dani is also keen to stress that menopause after cancer is an ongoing journey, and in many cases it might be a question of managing symptoms rather than stopping them. She feels that being aware of that is an important part of acceptance, finding their own path, and feeling empowered through their menopause experience.

She says: “Understanding that for most, even if they can have HRT, it’s not going to be enough, is important for helping women navigate their own journey. Some might tap into other hormonal options, or complementary therapies including acupuncture, CBT, mindfulness based approaches, and the wider lifestyle approach including the exercise and diet toolkit. For most people it takes a multifaceted approach, and they often have to work quite hard to find out what works for them. When we talk about an empowered menopause patient we never think of them as someone who’s symptom free, but someone who understands that they have options and what they are. I think it’s also important to acknowledge that people will struggle to some extent, and share those experiences so other people don’t feel so isolated either.”

The role of holistic wellbeing in menopause support

As things stand, medical menopause seems to fall into a category that’s familiar to the spa world when it comes to navigating cancer – where the medical profession seeks to treat the cancer, it falls to others to treat the person. For women experiencing menopause after cancer, the experience can be devastating and disorienting without support. However, it’s not considered life threatening, so it isn’t a medical priority, and indeed many doctors themselves are not given the tools or information to help.

While there’s no one size fits all approach, holistic wellbeing is emerging as a space that can provide sanctuary, as well as different pathways that may be helpful for individuals, such as nutrition, holistic therapies, dedicated exercise programmes and so forth. For example, a study published in BMJ Open found that women who received five weeks of acupuncture saw reduced hot flushes, night sweats, sleep disturbances and emotional disturbances. Meanwhile, multiple studies have pointed to the benefits of nutritional interventions for supporting health during and beyond menopause. Then again, holistic wellbeing spaces, including spas, might help with individual symptoms such as hot flushes, anxiety, stress, skin changes, or simply providing a space for some time away from all the medical jargon.

Dani says: “For us, no treatment is better than another – medical support isn’t superior to complementary therapies, or the other way around – it’s all about what helps the patient at that moment. For some, accessing holistic therapies might be wonderful to calm down the nervous system and make them more confident about seeking help somewhere else. Some don’t want more medication because they have already had so many drugs already, while others are happy to stick with the medical approach. You simply don’t know what is going to work for an individual, so the most important thing is to give people the agency to find out what works for them and empower them to go after that.”