Navigating menopause in my 30s after ovarian cancer: Suzie’s story

Joining Dr Louise Newson on this week’s podcast is Suzie Aries, who shares her story of menopause following treatment for a rare and aggressive ovarian cancer in her 20s.

Suzie talks about her cancer diagnosis and treatment, including raising £250,000 to fund treatment not available on the NHS. She also shares the realities of menopause at a young age, how HRT has helped her menopause symptoms, and why she takes HRT for her future health.

Finally, Suzie offers advice for women on how to advocate for themselves during healthcare consultations, and why being knowledgeable, confident and curious is key.

You can follow Suzie on Instagram @suzieclair11 and find out more about her story via her Facebook page Suzie Aries: kicking cancer’s butt.

Click here to find out more about Newson Health.

Transcript

Dr Louise Newson: [00:00:11] Hello. I’m Dr. Louise Newson. I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. I’m also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research, bust myths on menopause symptoms and treatments and often share moving and always inspirational personal stories. This podcast is brought to you by the Newson Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So on my podcast today, I’ve got someone called Suzie who doesn’t look like the average menopausal woman that you Google who’s got grey hair with a fan, who’s middle aged or even in her late 50s. So Suzie is young and she’s going to share her story, which I hope will help to educate and reassure many people. So thanks for joining me today, Suzie. [00:01:23][72.9]

Suzie Aries: [00:01:24] No problem. Yeah, happy to be here. [00:01:26][1.3]

Dr Louise Newson: [00:01:27] So just tell me a bit about you and the age that you were when you became perimenopausal, menopausal, when your hormone levels changed. [00:01:35][8.8]

Suzie Aries: [00:01:37] It was probably about, so I’m 32 now, and it was probably three or four years ago that I noticed a big change in my hormone levels, in my energy levels, getting their hot flushes and all of those kinds of symptoms. That, well I suppose show that you might be menopausal. But for me, it was something that I probably expected because I’d gone through a lot of cancer treatment. I was diagnosed with ovarian cancer when I was 25, so I’d gone through a lot of cancer treatments, chemotherapy, surgeries, various different things. And finally, I was told that the last kind of option was to have full abdominal radiotherapy. And so that was kind of the point where I thought, okay, that’s my, I suppose my fertility journey is ended here. And I suppose I knew I’d go menopausal, but I didn’t expect it to happen in the way that it did, really. [00:02:37][60.5]

Dr Louise Newson: [00:02:37] So yeah, so 25 diagnosed with cancer of the ovaries is not very common, is it? [00:02:43][5.6]

Suzie Aries: [00:02:45] No, no. It’s incredibly rare. I, hindsight is that I had all of the symptoms for it, but I had no idea of them at the time. And I it wasn’t something that was on my radar. I don’t think it’s something that’s on anybody’s radar when they’re 25, I was trying to make ends meet as an actor at the time and, you know, working my day job and then trying to do my dance rehearsals and things in the evening, it’s just, it was a lot. And and then I was feeling really fatigued. I was feeling bloated. I needed to go to the toilet all the time. I felt like an old woman going back and forth to the toilet when I was trying to sleep. And you know, all of the symptoms were there. And then I got the diagnosis and it was a massive life changing experience from there really. [00:03:32][47.0]

Dr Louise Newson: [00:03:34] So was that picked up on a scan? [00:03:35][1.1]

Suzie Aries: [00:03:36] Well, actually, I have to admit, there are a lot of other people that would have a different story. But I cannot thank the NHS enough for my diagnosis because, well, I suppose my, not even my GP. It was a nurse practitioner at my doctor’s who I ended up going to see when I was feeling really poorly and I was explaining to her the symptoms I was having and, you know, tenderness in my tummy and all these kinds of things. And she immediately noted those symptoms as what they potentially were. Even for someone at my age, I’ve heard so many other stories of young people that have been diagnosed with cancer very late because they’ve been turned away and said, well, no it couldn’t possibly be this. I mean, she said, worst case scenario, it could be cancer. And that’s exactly what it was in the end. So I absolutely have her to thank for getting me on that journey very, very quickly, because by the time I was diagnosed, I was probably stage 3 or 4, which for most people is not good at all in terms of prognosis. But somehow I manage to still be here. So thank goodness for that. [00:04:44][68.3]

Dr Louise Newson: [00:04:45] Which is wonderful. But obviously the treatment that you’ve had has stopped your ovaries working and our hormones, a lot of our hormones are produced in our ovary, but as many listeners know, also produced elsewhere. But without your ovaries, whether they’re removed or they’ve had chemotherapy or radiotherapy or damaged in some way, then people do become menopausal. But in a lot of women I speak to who’ve had cancer treatments for different types of cancer that have had treatments that have affected the way their ovaries work, especially when they’re young, the concentration has been on fertility. Menopause might have been mentioned, but there are two things that concern me, and I don’t know whether it was mentioned to you. One is the symptoms, because symptoms can really affect people in so many different ways. But also as a physician, the future health risks of not having hormones is something that I don’t hear spoken about enough. And I understand in the crisis time, the most important thing is to focus on the cancer. Absolutely right. But and the big but is we need to think about after the cancer, beyond the cancer, because hopefully, as you’ve proven, prognosis outlook can be very good. And you’re young, you’re only in your early 30s. So it’s that future health benefits of having hormones that I worry that isn’t discussed enough. So I don’t know was it discussed much with you at all, Suzie? [00:06:09][84.4]

Suzie Aries: [00:06:10] Well, I mean, the only people that spoke to me about my future health was you guys. When I spoke to one of your lovely doctors. I at the time of when I, you know, started speaking to gynaecologists and kind of menopause doctors within the NHS, they just looked to me like I was anybody else going through this, which I really am not. I am a lot, lot younger than most people that do go through this, which means that my hormone levels need to be higher and not just to kind of sort out the symptoms like hot flushes and things like that, but also for the future. As you say, I don’t want there to be a problem in the future where I, I don’t know, as you say, you can get heart disease if your hormones aren’t right, you’re at higher risk of getting dementia if your hormones aren’t right. And I don’t want that to happen. Obviously, I want to try and live as long and as healthier a life as I possibly can. [00:07:10][59.6]

Dr Louise Newson: [00:07:11] Yeah. And it’s really, it can be very confusing for lots of people because actually even if you look at the insert for HRT, I don’t know if you’ve ever done it for your hormones and it will say risk of ovarian cancer. And that’s actually come from a study, an observational study that was done quite a few years ago, but it was using older types of synthetic hormones. And even then, the risk is probably not there. It’s so small. But when it’s observational, it’s not really good data. But we don’t use those types of hormones. We’re just using natural. We’re just replacing like for like. And so we know the hormones are very anti-inflammatory. They’re likely to reduce any inflammation, any cancers going forwards as well. But if, when we don’t have really robust evidence, certainly in my clinical practice is we share uncertainty with patients and we say there may or may not be risks, but we know that there are benefits and it’s up to that individual. But if you haven’t had that conversation with anyone and haven’t been allowed to have a choice, then you’re very much left on your own, aren’t you? [00:08:10][59.6]

Suzie Aries: [00:08:11] Well, yeah, absolutely. And it was only I think it was when I spoke to you guys or I questioned about the risk of cancer returning based on having HRT, because that’s one of the things that the doctors say to you is that if you take too much of this HRT, your risk of getting cancer. And one of the biggest kind of takeaways that I’ve had from you guys is that actually I think it was someone said there was no, the risk of getting cancer was no higher than that of getting cancer when you are older anyway. [00:08:44][32.8]

Dr Louise Newson: [00:08:45] Yes. So people are still going to have a risk, but that doesn’t mean it’s related to the hormones. And I think that’s really important because there will be people that will get recurrances, that will have a new cancer on HRT, but there will also be people that will trip down the stairs or, you know, fall over and that’s not related to their HRT. So but because I think everyone is so scared, if something negative happens, it’s easier to blame the HRT. But the problem is all hormones have been grouped together as evil, whereas our own natural hormones, you know, you’re designed in your 30s to have hormones and they’re very beneficial for your future health. So to have them taken away and not replaced without good reason could affect your future health and day to day functioning if you were getting symptoms as well, which it sounds like you were. [00:09:35][49.3]

Suzie Aries: [00:09:36] Yeah, absolutely. And interestingly, I work as a sign language interpreter, which means that you need to have your processing there. You need to be able to process information from one language to another. And if you’re suffering with brain fog, like I know a lot of women do when they’re menopausal, that processing becomes that much harder and it’s already hard anyway. I was working with a lady who was struggling to do her job and she said, yes, I’m in the menopause, I’ve got brain fog. And in my head I was going so Why are you not doing anything about it? This is your job and it’s starting to affect your job. And she’s probably freelance like most interpreters are. And so there’s no way that, you can’t, like, take a day or there’s no policy, there’s no menopause policy to protect her if she’s free;ance. So, that really hit me bad because I went, gosh, okay, well, if that was happened to me, I’m a new interpreter. I can’t, I don’t want to blame anything on the menopause, especially when there’s something you can do about it. [00:10:38][62.8]

Dr Louise Newson: [00:10:39] Yeah, and that’s so important, Suzie, because we know the conmmonist symptoms are those affecting our brains. Because our hormones work in our brain, as you know, but especially memory processing and cognition, but even, you know, our mood as well. So a lot of people feel quite flat. They feel quite joyless, they have less motivation and they’re more tired. But we know that actually the way our brain works is really crucial for the way we function, especially in our work. And if you have a job where you need your brain to work very quickly and process things very quickly, and you’ve been used to having that, when it’s taken away from you, it can be very difficult. And for so long we’ve forgotten that our hormones have a role in our brain because it’s been about flushes, it’s been about fertility, it’s been about periods. But actually, you’re absolutely right, because so many people are giving up their jobs or reducing their hours or taking different jobs, often at lower pay, because they can’t function at the level that they’re used to. And we see it time and time again. And it’s very sad when they think, well, that’s just my lot. That’s just because I’m menopausal, without having those hormones back, because we know they improve the connectivity of the neurones in the brain, they help the brain to function. We’ve known this for many years. It nearly a hundred years we’ve known the effect on the brain, but it’s been ignored. And I can’t quite understand why. [00:12:06][86.7]

Suzie Aries: [00:12:06] So one of the jobs that I did as an interpreter, of course, I adhere to a code of ethics and you have to remain impartial is one of them and interpret as accurately as you can and this, that and the other. And it was a GP appointment and I go to GP appointment and this woman is reeling off what I know to be menopausal symptoms. Of course she doesn’t know that. And the GP kind of says, okay, how old are you? Let’s have a look at how old you are. Okay. You’re this old, right? That’s probably a box ticked. It could be menopausal symptoms and. Okay, well, I think we could try some HRT, But, you know, I do have to warn you that, you know, there’s this, that and the other, and that’s the risk of cancer in there’s. And I was there interpreting this information to this person through gritted teeth going I, I just I can’t say anything, you know, because this is a medical professional, but I know this to not be the case. So it was a bit of a tough ethical moment for me I think, having knowing what I know about HRT and the menopause and then having to give what I thought was incorrect information to this person with very you know, you must be cautious. And after a month they said, I think they said after a month, if your symptoms don’t go away, I think we should probably stop. And again, I was going, no, that’s not long enough. [00:13:26][80.1]

Dr Louise Newson: [00:13:27] So did you say anything at the end to that doctor? [00:13:30][2.7]

Suzie Aries: [00:13:32] I didn’t feel I had the place to. But I think if it were to happen again, I probably would. Actually, I take that back. I actually said it’s worth looking on Newson Health if you want to get up to date, accurate information. They have a lot of information on there. I think I signposted to you guys because I know that you are the best, you’re kind of a specialist at it. But yeah, that was a bizarre, a bizarre situation to be in. [00:13:56][24.2]

Dr Louise Newson: [00:13:57] Absolutely. And it is very difficult for people because they’re told different things. And every day in the clinic we see and speak to women who have been told different information. And there is confusion because of this, lumping all the hormones together, thinking they’re all the same and metabolically biologically, they’re very, very different in our bodies. And our own natural hormones, of course, are not made to be detrimental because of course they’re not. We’ve got hundreds of hormones in our body and they work very well and especially when people are younger. I did some work with NHS England a while ago. It was a big national programme for menopause and they said that they were going to focus on women over the age of 51. And I actually put my hand up and said, Actually, if you’ve got limited budget, I would focus on the one in 30 women who are under the age of 40 who have an earlier menopause. And they said, well, it’s not common enough, Louise, to worry about. And actually, I sort of thought, but I kept my mouth shut because I often get, you know, misinterpreted sometimes. But actually it is common enough. One in 30. So in your average class at school, that’s one child or, you know, it depends if they’re mixed classes of course, there might be one in every two classes, but that’s a lot of people that will grow up and become menopausal at an early age. Far more common than other conditions. But the health risks associated with it are huge and we know from some studies that women who have an early menopause don’t have typical symptoms so a lot don’t have flushes or sweats, but they still have these low hormones. And so we should be more proactive as health care professionals. We should be going in to companies and organisations and talking about hormonal health, because a lot of people, if it happens without having something like cancer treatment, it can be more gradual. But there are signs there. They might have had worsening PMS or worsening PMDD. They might have skipped a few periods, they might know that they’ve got a condition that might increase their risk of having an earlier menopause or they might have lots of family members that have had early menopause as well. So we need to be really proactive in picking these people up to reduce suffering, but to improve future health. Because if you don’t have your hormones at a young age, you’re more likely to drain the NHS at an older age because you’re more likely to have more conditions. So it is cost effective, but it doesn’t sound very exciting. And I know when I was a junior doctor, someone said to me, If someone comes in, Louise, who hasn’t had their period and young, just make sure she’s not pregnant. That’s all you need to do. So I hate to admit, but for many years that’s all I did, because I didn’t even think about women who are young menopausal because no one had taught me. So I’m making up for it now. But there will be other doctors who will have been taught by the same people and my age who won’t be thinking. So how do you think we can get more information out? And how do we empower clinicians when we’re the patients? Because as you say, even just interpreting, you can feel quite threatened when you’re, not threatened, but quite, it’s difficult when you’re, I’m talking now as a patient, but when I go and see a doctor, I know their time’s precious. I feel a bit nervous. I take every word they say very literally, and it’s very difficult to have a discussion depending on the doctor, especially if they’re very closed and quick in their consultation process. Some doctors are very open and reflect and say, What do you think? Are you happy with that? Is there anything you want to ask? And then it makes it easier for you. But I do feel as patients, we have to be our own advocates. Many people know I can’t get the dose and type of hormone I’m on on the NHS and I’ve given up trying, but it’s still very difficult. But how do you think that we should be better advocates as patients? [00:17:48][230.5]

Suzie Aries: [00:17:50] I think from my own experience, and that’s including my cancer journey, I have been a huge advocate for myself. I don’t think I would have been had I not had my mum there with me. She advocated for me and we advocated for me together and throughout the whole thing. But I think it’s just it’s having the knowledge yourself rather than going in there with no idea. I think it’s that thing of empowering yourself with knowledge and getting the knowledge and kind of knowing the symptoms, knowing, you know, what’s wrong with you and getting the information about what potentially you need before you go in. Because otherwise you’re going to be sat there nodding your head at whatever this professional is telling you. And of course, they’re a professional. They’ve been through years and years of training, but they don’t have the, especially the GPs, the specific knowledge base to know what you need in this situation. And then it might take a year to be referred to someone who may well be a specialist, but is following these very specific guidelines which aren’t going to match you. And so I think is having that knowledge, but also being able to be quite assertive. In the deaf community, it would be this sign [signs]. It’s one of my favourite signs, I think. It’s that being confident and being assertive to back yourself when you’re speaking to someone and say, Well, for me, for a young person, I am not your usual. I’m not the most common person that has the menopause, but it’s just backing myself to know there’s something not right. And I don’t want this to bother me forever. I think it’s a mixture of those two things. Going in with knowledge and having the confidence to back yourself. [00:19:35][104.9]

Dr Louise Newson: [00:19:35] I think that’s so important because I know certainly with some of the treatments that you had for cancer, you had to really be your own advocate, didn’t you, and seek the right treatment for you? [00:19:46][10.7]

Suzie Aries: [00:19:47] Yeah, absolutely. There was one particular treatment wasn’t on the NHS for me, which was immunotherapy. I think it’s becoming more widely used now, but still not for my cancer. I mean, my cancer was incredibly rare anyway. It was a small cell ovarian cancer of the hypocalcaemic type. Bit of a mouthful, but that treatment wasn’t available on the NHS. There was a very small study of four women that had gone through radiotherapy plus immunotherapy as a combination, and three out of four of them had come out cancer free long term afterwards. And we just went, Well, that’s good enough for me, let’s give it a go. But the NHS were incredibly reluctant to do it. They did send off funding applications and things, but everything was turned down, so we had to fundraise £250,000 for it. But I mean, that’s where I start to believe in humanity again because I got, you know, video went viral. I had people from all over the world donating to me. And so it was incredible. It was, that was a case where the NHS were very reluctant or very sceptical about this treatment because there wasn’t 4,000 trials of it. There was four. But I think it was where both me and my mum went, This is the right thing to do, this is what we want to do. There’s what, what are the other options? We’d say to them. They didn’t have any other options and so we just pushed and pushed and pushed until they said yes. And I think that’s something that you also have to do for HRT and for menopause treatment. I’m actually now, having pushed a lot and having, as I said, used the knowledge that I’ve got from speaking to you guys and from my own body and my own experience, I’ve now managed to convince the NHS to fully prescribe my HRT for me now. The testosterone was only recently added and I’m absolutely thrilled about that, and that’s a large sum per year that I’m now not going to have to pay for. Well, hopefully not. [00:21:51][124.6]

Dr Louise Newson: [00:21:52] Which is wonderful. And a lot of people come to our clinic and increasingly GPs take over their care for their HRT, not always testosterone, but increasingly it is, which is so important because it’s very easy to get other drugs such as antidepressants or blood pressure drugs or statins or whatever. And they’re not even drugs, they’re just natural hormones really. We need to think very differently, change our language and think about the benefits. And actually, if you’re feeling well, which thankfully you are, if you’re healthy, which you also are, you’re less likely to go back to your GP, you’re less likely to be referred to the NHS. You’re saving money even though they’re spending money on HRT, which is actually quite cheap. So it is a cost effective thing. And when you’re young you know you’re going to be on HRT hopefully for decades, you know, for many years. So it should be available for you. It shouldn’t be something you have to come to a private clinic for. It doesn’t make sense, does it? [00:22:51][58.9]

Suzie Aries: [00:22:51] No. No, absolutely not. And I think most specifically, testosterone. I think that was the turning point where I started on a bit of progesterone and a bit of oestrogen. And then it was… It like got to the point where I was having enough oestrogen and I was feeling fine. But I’m a very sporty person and I was still feeling a bit unmotivated and a bit, just a bit lazy and not full of enough energy for myself to want to actually go out and do the exercises. And I think at the time, I think one of the big ones was that I just didn’t really want to have sex with my partner, which, you know, it’s not something you want as a 30 year old. You don’t want to just be there feeling like a cabbage. So and it was the testosterone that immediately well, not immediately. It took a little bit of time to work, obviously, but it just, that was the change. But then when I did initially ask the NHS, they were saying, no, no, it doesn’t fit in with our guidelines of anything. And I just went, I want to throw your guidelines out the window. Your guidelines are just this one size fits all thing, and that’s not the case here. But now they don’t. [00:24:01][69.8]

Dr Louise Newson: [00:24:02] Yeah. And I think that’s very important when we do mention guidelines, because there’s guidelines in everything that we do as healthcare professionals. But they are a guide. They help assist in a general population. But the thing is, is that we are all individuals. We have individual lives. We have individual choices. We have individual decisions about what risk or benefit we’re prepared to take. And we all have our own lives. But also we can make our minds up if we’re consenting adults. And we also have the ability to change our mind. So if you wanted or read something, you can stop your treatment, you can restart it. It is up to you as a individual. And what really saddens me with so much in hormone health is that that decision isn’t even there. It’s not allowed almost. It’s sort of felt like you really have to plead and justify to have something that could make a real difference to you. And if it doesn’t make a difference, then don’t continue. And but people often aren’t even able to start or like you say, optimise that dose because it can take a while to be on the right dose and type. And then that’s why it’s important like you say to see someone who’s really knowledgeable, but works together with the patient. You know, it’s not very rewarding as a doctor to be in a uni-directional relationship where you’re the person in control, you’re the person as a doctor who is basically telling the patient what to do. I do not like those consultations. Very different for my husband, who’s a surgeon. He has to be in control in the operating theatre. Very different. But actually, when it’s a consultation it’s a two way process and even for him, it’s a two way process when he’s deciding the operation. And often a patient might want one operation and he’ll advise something else and they talk it through. But somehow we’ve lost the ability to talk and share, especially when there’s uncertainty. And that’s a great shame. So it’s amazing that you’ve been such an advocate in so many ways. You know, hormone health is just one part, but you have been a huge advocate for your health and you’re living proof, how healthy you are now, aren’t you? [00:26:15][133.6]

Suzie Aries: [00:26:16] Yeah, yeah, absolutely. And I think there’s also well, I suppose on a slightly different note is that obviously women, I’m a woman in my 30s and I am on HRT and in the menopause, which is obviously, as we’ve already said, a unique situation. And I recently met my, who will now be my lifelong partner, the love of my life. And I knew the moment, it was probably it was like our second date or something. And I’ve been dating for, you know, a few months and hadn’t said anything to. I think I’d said something about it to one person who I thought, they seemed quite nice. And as soon as I mentioned it to them, they couldn’t run fast enough. Whereas as soon as I told my current partner, this is the situation. I can’t have children in a biological way. I’d like to have children in a different way. I do have to take HRT every day, you know, rub this gel on my legs, you know, and things like that. And he came back with the most amazing response to it. And he’s been nothing but supportive and kind and where a previous relationship where I’d started it, would always say, have you washed your hands, make sure, you’ve got to wash your hands afterwards. And of course I’d wash my hands afterwards. But it was that. It was almost like a punishment, which wasn’t particularly nice, whereas I’m just, I’m accepted for who I am. And I have to be honest, I get the odd, not brain fog, but the odd kind of like thing where my brain is a bit meh and I don’t know whether that’s just something that comes up every so often. Whether it’s the menopausal symptoms, I don’t know. But I’m given nothing but love for that and appreciation. And I think that’s one massive thing that’s helped me accept where I am, is that I am now with a person who accepts me for who I am, for the gel that I rub on my legs, for the tablets I take at night, and for the fact that we’re going to either adopt children or go surrogacy route and and we’re going to have a lovely family at some point in the future anyway. And so I think that has that has been a huge help to me, kind of on my journey is just being accepted for who I am now. [00:28:24][128.5]

Dr Louise Newson: [00:28:26] What a brilliant way to end being accepted for who you are. I think we all should think more about that. There’s so much I realise as I get older we can’t change about ourselves, so we just have to embrace and make the most of it. So I’m very grateful. But before we end, three take home tips and I think it should be three tips about how to be the best advocate for yourself for whatever treatment you want or you don’t want, you might be refusing treatment. So what are the three things that you’ve learned that you can share about being an advocate for health? [00:28:56][30.6]

Suzie Aries: [00:28:58] So firstly, as I said before, the gaining knowledge yourself, because you know, you’re an example of where there’s incredible knowledge there and resources that people can use to gain that knowledge before they go to an appointment. I think being confident and backing yourself with that knowledge. So I suppose those two come hand in hand. And I’ll add just off the top of my head probably being curious as well, rather than just kind of like taking your lot and just going, oh okay, well that’s going to happen. It’s that thing of, but what if, what if it could be better? What if life could be better? And what if I could feel better rather than just, oh I’m just going to have to feel like this now. I think it’s curiosity is another big one as well to just be curious as to whether things could be better, because they probably can be. Testosterone, you know, being that example for me. So those are my three. What wa it? Knowledge, confidence, curiosity. [00:29:55][57.2]

Dr Louise Newson: [00:29:57] Love it. Very good. Thank you ever so much, and keep going. [00:29:59][2.5]

Suzie Aries: [00:29:59] Thanks you much. Yeah, will do. Thank you. [00:30:02][2.4]

Dr Louise Newson: [00:30:07] You can find out more about Newson Health Group by visiting www.newsonhealth.co.uk and you can download the free balance app on the App Store or Google Play. [00:30:07][0.0]

ENDS