75: Breaking Stigma and Personalised Care with Dr Louise Newson

Welcome to the Dear Menopause podcast, where we discuss the menopause transition to help make everyday life a little easier for women. Hey there, this is Sonya. I am the host of Dear Menopause and I am a fierce and, at times, impatient advocate for women's health. Today, my guest is Dr Louise Newson. Louise is one of a few top UK experts on the menopausal transition and she has helped hundreds of thousands of women through her clinic app and websites. Settle in. Enjoy this absolutely brilliant chat between myself and Dr Louise Newsen. Dr Louise Newsen, welcome to Dear Menopause, thank you. Thank you for inviting me. It is wonderful to have you here Now. for any listeners that are not familiar, with who you are and I am sure there might be some out there. Why don't you give yourself a little intro and tell everybody who you are? A little bit about the background of Louise Newsen and the Newsen Health Group.

So I am a GP, so a family physician, but I have also got a pathology degree and I trained in hospital medicine for many years and then pivoted into general practice. But the last seven years the nice menopause visits came out. I dedicated my time, effort, energy into looking after women who are menopausal or perimenopausal and five years ago, almost the day, we opened a clinic a doctor myself because we started to see this massive unmet need for women who were just being underserved, not listened to and not able to receive the evidence-based treatment that they need to improve not just their quality of life but their future health as well. So we set up the clinic and then the stories that we heard were very distressing. I had also started to play with the media and social media because I thought, actually why do I have all this knowledge and other people don't? And it's all very well, me having the knowledge is a healthcare practitioner, but actually, as a menopausal woman myself, I want access to information that's not biased, that's not funded by a farmer, that I couldn't just make decisions myself about my future health, and then we decided to develop and launch the Balance Menopause app, which came out about three years ago, and then we've also worked very hard on education as well, so we've just actually relaunched our competence the menopause course that is now actually available for anybody. So I don't care what job they have, or, if they don't have a job, I don't care what gender or sex they are. Anybody can access the same information that healthcare is.

Yeah. So let's talk about that for a moment, Because that course you originally launched for medical practitioners, didn't you?

You know, in medicine, I mean I'm really embarrassed that I didn't have any menopause training and I look back with horror at some of the things that I had said to patients that I just hadn't thought about the menopause because I didn't understand, didn't know the myriad of symptoms, didn't really understand how easy it is to prescribe HRT either. So I learned a lot by sitting in other people's clinics, but actually it's not practical to sit in other people's clinics Some training programs that you have to sit in and write up cases. Well, in my mind, any healthcare practitioner who has an interest in the menopause should be seeing and helping women, not sitting in and serving. So what I decided to do many years ago so before COVID, before we did all this online work, I decided to make a course that was available online that people could do in the comfort of their own home. We had to take a lot of study leave and time, but also we filmed actresses. So we filmed ourselves with actresses who are pretending to have different symptoms and different histories, so that you could really see a select group of women who people are likely to encounter in their medical practice, and we've linked everything to available evidence, to papers, but also to resources, because, you know, I've also been a medical writer for many years, so we've got a huge amount of information on our website, on my podcasts, on videos, so we've linked all that as well, and we had over 30,000 downloads of the course, with the most phenomenal feedback from GP, nurses, pharmacists and say it's changed my practice. I've got so much more confidence in diagnosing, managing, talking to patients. So what we then decided to do was to revamp it. Really Now I'm fortunate I've got a lot more people working with me, so we've got a lot of our clinicians to review it. We've got an education lead. We've got an editorial lead, so we've gone to Twitter and updated it Twitter under different platforms, so we've got more control over it. So it's good to have the control, but what we decided to do was make it available to anybody. So some of it's free, some of it's paid for on a subscription, but all that money is just going to be recirculated back into funding more education but also some research, which is really needed.

It's fantastic and I love that you have opened that education portal up to everyone, because I think here in Australia, I feel very much that we are following the lead of what has unfolded in the UK, and it was one of the reasons why I was so excited and keen to get this opportunity to talk to you, because I feel that there's so much that we can learn from what you have experienced, what's played out in the UK as to we can learn from your mistakes. We can learn from what worked, what didn't, and then we can implement that here, and I truly believe that one of the biggest and most fundamental things that we can be doing right now is education, and that's education across all facets. So it's education of women at the fundamentals, it's education of our practitioners and, like you say, nurses and allied health. It's education of medical students that are currently in their curriculums at university. You know, education is just so important and it's something that's really lacking here in Australia right now.

Absolutely, and it is everywhere actually, and there's so much misunderstanding. And even the work I do, you know, a lot of people are looking at England and saying, wow, it's so good, but actually it's not. I spend a lot of my time really frustrated. There's still the people of influence are listening to wrong things, they're not reading the data, they're not understanding the evidence. There's still this sort of frivolous thought that, oh, hlt is just a lifestyle drug. People take it because they want to look like celebrities. Well, the number of women I've seen who have been suicidal, who have been really distracted, who have been taking so many different medications, medicalized their menopause in the wrong way I've just lost count. So we need to sort of wake up to the fact that women can't be gaslighted anymore and I feel that there is a shift, not just in the UK but globally, that women are understanding. And you know my work as a doctor is to help patients. I didn't find out to be a doctor to help other housecare practitioners or to be subject to bullying or harassment. What I did do was to help improve the wellbeing of patients and if I can also improve their future health, then to me that's, you know, a huge positive, you know, contribution to medicine. That I'm doing, but I don't feel it should be just in the confines of my medical practice. I would be naive if I thought I could personally help 1.2 billion women worldwide who are menopausal. So I think there is this sort of team effort actually, and it's coming from the ground up, which actually is probably the most effective way of getting things done.

I think one of the things that I like so much that I have heard and I don't have a lot of experience with the UK medical system or your private health system but the conversations that I've had here with friends and colleagues that are expats so UK expats that are implanted here in Australia now and they talk about a more patient-led care in the medical system than it seems we have here. You know, I personally in my own health journey, have experienced very much a you have this, so you need to take this, and that's the end of the story, and there is not a lot of dialogue back and forth along the lines of is that okay with you? How do you feel about that? Would you like to try something different? Is that something that's a bit more unique to the UK? Is it unique to the private? This is the public system.

No, I think it really depends on the individual practitioner and apparently it's the way we train. So it's interesting. Actually, when I trained as a hospital clinician obviously it was many years ago, it was in the 90s and people really did just write up medication on the end of the drug chart you know, the end of the bed drug chart write it up, didn't really talk to the patient. Basically, you have asthma. You will take this end of conversation. Some of it is historical, but some of it is the way we're trained. When I then pivoted and went into general practice, my trainer said Louise, you're going to be a terrible GP and I've always been quite a high achiever. And I said but how? What do you mean? He said because you're not going to understand patients, you're not going to share decision-making processes with them. And I said what do you mean share decision-making? He said you have to ask them what they want. And I said well, they haven't got a medical degree. How are they going to know? He said because listen to it, just try. At the end of your consultation, when you explained everything, say to them how does that sound to you? What do you want to get out of this consultation and which treatment choice would you like? And I said but that's madness, they would look at me like I don't understand what I'm talking about. Anyway, he was a really inspirational trainer. So I did it and it was a really interesting. Even simple things like someone had a barned-all chest infection, coughing up green sputum, really high temperature, and I'd say to them, would you like antibiotics or not? And sometimes they would say no, I wouldn't actually, because every time I say antibiotics I have thrush and it makes me feel really horrible afterwards. So then I could explore what to do about the thrush and how important it might be for this person to have antibiotics. But actually, you know, we can get on board with the thrush and I can give the thrush treatment prophylaxically and everything else. So he really opened my eyes to that. But there's still a real hierarchy in medicine. So a lot of the work I'm doing, when I'm getting pushed back by other doctors, it's because they're endocrinologists or they're gynecologists and they see me as only a GP. And when I try and say to them look, I've got a first class honours degree in pathology, I've got distinction in my MRC GP exams. You know I'm a member of the Royal College of Physicians, why do you think I know less than a consultant gynecologist who's just done the bare minimum? Like it doesn't make sense. But there is this hierarchy and I see it in other countries as well and you know, and then, goodness only, we're actually asking nurses and pharmacists to look after women. Well, they're brilliant, they have quite a few in our team and I really enjoy working with them. But again it's sort of oh no, a medicals has to be looked after by gynecologists. Why it doesn't make sense. Actually, because it's a medical specialty, because it affects every single organ in our body.

It's fascinating, and I really hope that we can create a shift in the approach to patient care here in Australia as well. And I do feel that there's a shift coming and I know that there is, you know, a lot of advocacy going on. I'm lucky to be a part of that, so I see this stuff that's going on in the background. I just hope that we start seeing it trickle out into the actual healthcare system as well and with the medical practitioners. One of the questions that I was really keen to ask you was five years down the track from opening your first clinic. What do you see that has changed in the UK in those five years and what do you think still needs more work?

There is a great question. I think there's a lot more understanding, the totally is. There's a lot more unpicking of the evidence, which is great. There's a lot more women who are understanding what's going on, so that's really positive. And there's a lot more healthcare practitioners who are trained, empowered, you know, really doing force. But and there is a big but there's still a lot of misunderstanding. There's still a lot of people who aren't able to get care. Stories that I hear every day on my social media, just in general, are harrowing. We had a lady two days ago who flew over from Australia to get help. She came to the clinic. She had an Eastern Inverceptor negative breast cancer a few years ago and no one in Australia, or she couldn't find anyone, to treat her. I mean that to me, is harrowing and disgusting. Actually, she wasn't allowed to make a choice about her future health by any clinician over the other side of the world. And there's also, you know, a lot of pushback. I've been to meetings where they're saying Louise, your media attention of the medicals has to stop. We're overprescribing HSC. The pageant has swung the other way. We need to reinvue people back in. We need to think about CBT cognitive behaviour therapy. We need to think about overwater swimming. We need to think more about antidepressants. These are people at high level that report to our government and NHS England, so that really, really upsets me. They're talking about let's allow women to do self-care, so we need to reduce referrals to GPs who have already stretched Well. Actually, you know, if we treat people properly, we won't have all the co-morbidities and the diseases when we're older. One of my best friends' mother just had a simple fall but she's just now in a hospital waiting for her fracture of her arm and her leg to be amended. It's a doctor's strike over here. She's waited 48 hours unable to have her operation. Now she doesn't take HRT and I'm not a best-in-person, but I can really tell you that she had been taking HRT for the last 20 years, it's unlikely she would have had two fertility fractures. She's otherwise fit and well, looks after herself. So you know things like this they've got to look in the long term. I think that's the other problem. And the other problem I think is that it's too much pharma involvement actually, and big pharma don't want women to take HRT, because some women take HRT, they're healthier, they take less medication and there is this big suppression of that. An HRT is so cheap, so that really worries me as well. I mean, as you know, I don't do any paid work with pharmaceutical companies. There are a lot of menopause specialists that do and there's new drugs that's coming out that's helping supposedly evade the motor symptoms that affect them and you're a kind of receptors in our brain. They've spent like $2 billion on it. They've got to get this money back. So most menopause societies I know are being funded by this drug company and actually, if you look at the evidence, it's not much better than placebo. We don't know the long-term effects of the brain. They're saying that people have to regular liver function tests, so we don't know the effect on the liver. But we've got an evidence-based treatment that's just our hormones. Like why are we trying to fix something when we've got the best treatment available?

Really, good question and I know that you are very vocal in the media and obviously on social media as well. No, are you managing the frustration? I know that you have very high levels of frustration. I know that you spend a lot of time doing your headstands and yoga.

Yes, I do. Do you know what I think? It's down to my family. Actually, honestly and I'm not saying this for self-story I do not want sympathy, I'm not that sort of person. But I would have given up this job so many times really, because it's not easy, and I go on the media just to use my brain and my voice. I'm not doing it for any. You know that's what it means to be a news and show. You know my podcast has had nearly 5 million downloads. I don't get paid a penny for it. I'm not sponsored by it. I often do it. Well, I do do it in my own time, often late at night. I'm speaking for a last bit in another country. You know we've spent billions, or over a million, on Balanced Act. We spent over 300,000 pounds on our education, yet people keep putting hashtag chaser money on my social media. You know it's just frustrating and I honestly so many times crumble and say to my husband I just can't do it, I'm not made. I'm not a business person. You know, even internally, it's hard in the business finding the right people. What I have done is learned that. You know the truth comes out in the end, doesn't it? And I'm? You know I'm a very, very truthful person. I'm a very loyal person, but actually my husband just keeps reminding me Louise, who's going to help that woman that you've just seen in the clinic? Who's going to answer that direct message? You know, I had a direct message from someone yesterday who'd reached out to me and we gave her an appointment in the clinic and she said you've just saved my life. I've had eight years of hell and I can't even begin to tell you how awful it's been. I've, you know, I've given up my job. My grandchildren don't recognise who I am, and just the last few weeks of being on HRT you've transformed my life. Well, you know it's wrong that these people have to reach out to a complete stranger on social media to get help. So I feel like I've got in it too far and all I can do is say anything. You know even my children, and they've been bullied at school when they're young. They just surround yourself by the good people. Look at the people that are bullying you. If they're people that you respect, then maybe you should think about doing something different. But actually, the people that I respect and the people that are working with me actually are enjoying the journey and really making a difference to women. The people that are bullying me actually are people that are just spinning around on their own in a very small group, getting very frustrated and, as you said before, all I'm doing is allowing people joy. I'm not saying everyone has to take HRT and I'm not saying it's HRT or nothing. I'm not saying everyone has to get up and do headstands in the morning. I'm not saying everyone has to stop drinking. I don't drink alcohol or drink caffeine, but that's my choice. Like, let me have a choice with HRT as well, and I think that's the thing that I think actually you can be personal to me, but actually it's not just about me anymore. It's about the millions of women who are suffering.

And I think one of the things that you touched on then that often I feel gets lost in the conversation around the work that you do is that you are, it appears to me, often treating patients that are at the extreme levels, extreme end of the symptom scale. You're not seeing women that are just having a few hot flushes and perhaps a little bit of disturbed sleep. You are. You know I listen to your podcast, you know you're and shoot. This lady was into patient of yours. You were actually interviewing her and her husband about her mental health journey and odd episode to listen to. But you know what she experienced from a mental health aspect was so extreme and so heartbreaking and I would imagine that you know you are more often than not seeing women that are in those extreme situations.

Yeah, we have to see the I mean, we're especially a skinnick and of course we do. We see a lot of people who've been under psychiatric care and they're the people that gynecologists don't see and don't realize that they exist. And the problem is is that, yes, they're a small minority compared to the huge number of menopause of women, but because the menopause affects 51% of people, even if it's only 5% or 10%, that's still in one in 10 or one in 20 women. And a couple of weekends ago I visited one of my patients actually in a psychiatric hospital with the HRT shortage. She stopped taking her HRT and had tried to kill herself twice. And I went to visit her and you know the psychiatric hospital's full of middle-aged women, you know, and psychiatrists don't prescribe HRT, yet they prescribe all these other drugs with little evidence actually. And we know how important is to dial antistastarine and neurotransmitters and help in our brains. So you know, I feel like there's still a massive under-service to women actually, and it's often the women who haven't got a voice. We're doing some work in prisons and people are homeless. We've just done a survey on drug addiction and some of the stories we're hearing from that, which will present soon are really quite stressing. So it's the women who don't have a voice, who maybe haven't got social media, who haven't got an advocate to help them go to a health care practice there. And we're doing a lot of work behind the scenes to really democratise medical care and more and use technology to try and make it so that people can have better access to evidence-based care with paying less money, because that's really important. It shouldn't be a two-tiered system and it's a complete postcode lottery of care over here, but it is over there, I know, for you in Australia.

It is, yeah, very much. You know our. You know the people in Australia that are most at risk in and those that are regional and rural. You know, because of the geography of the country and the lack of care and services that are available in those regional and rural areas and it's just so heartbreaking. It's so easy for me to sit here with my privilege in the city and, you know, tell people to go and get a second or third opinion if they need to, but for many people that's just not an option and that is really hard.

No, I mean I've got a patient from Scotland, rural Scotland, so there's only one practice and she's one of our patients. She's been transformed with the right type of treatment. But she said that her GPs, whenever they get a letter from my clinic, they just look at it. They go in a circle, they look at it, laugh and throw the letter in the bin and they said that clinic can't be trusted. Well, she's really good, she's a researcher. She said look, I know everything that I'm doing. I've got a patient choice. I've been allowed to make a choice, not being pushed into anything. But actually, if you remember, before I took HRT, I was using crutches and I couldn't get out of the house. My life's been turned around and she's up to me to decide. You know she's quite strong, but how about all the other people that have been told that and can't change doctors? And I feel that there's a lot of unprofessionalism. If I was a cardiologist and had prescribed, you know, a heavy-duty cardiology doctor for someone's arrhythmia, they would respect me so much. But actually, because it's just menopause and because I'm just a doctor, because I'm a white, middle-class woman, you know, I even said to my children recently, if I was a man, they must work. My goodness, may I be knighted, you know, everyone will be buried out. Or if I was a hospital consultant, you know, if my husband had changed career and became a menopause specialist, it would be the best instance of my spread. But it's just really unequal and unfair and I think that's the problem With medicine and healthcare. Everybody should be able to have the same access to the same treatment, especially when it's evidence-based.

Yeah, the misogyny is real. Mm, that's lovely. Now there is a topic that I want to touch on with you and this is one that is very close to my heart, and I know that it is an area that you've been doing some work in and that is around the prescription of HRT MHT as we call it here in Australia. Anyone that's listening when Louise is talking about HRT, it is the same as MHT here in Australia for women who have had a breast cancer diagnosis Now, particularly an estrogen progesterone positive diagnosis, which was my experience. Now you interviewed Dr Avram Blooming, who is the author of Estrogen Matters, an absolute game changer of a book. His research, his studies into this are incredible, and I was. I think I experienced every emotion in my body possible when I listened to your podcast interview with him. That was the first time I'd really understood the work that he was doing and it was everything from anger because I have been denied MHT point blank, just note. You can't have it and it was the first time that I'd had it really clearly explained to me that my cancer being estrogen positive didn't mean that estrogen had caused my cancer. And I'm a smart woman, I know my staff, I researched stuff, but I had never had it explained to me that that did not mean that estrogen caused my cancer, and so that blew me out of the water, and then to learn that by being denied the MHT, it wasn't just about symptom management. We're talking about the potential for dementia risk down the track, and I have a family history of dementia for cardiovascular health down the track. I have heart disease in my family. I really want to explore this conversation with you a little bit if you're open to that.

Plus, I am absolutely, and I think it's really interesting. I was talking to a good mentor who's a doctor yesterday and I actually wanted to do oncology. I am going to answer your question, but I wanted to actually become an oncologist and I did some training, even as a junior and, well, a senior sort of medical student. One of my final year projects was to work 10 weeks in a big cancer unit a breast cancer unit actually in Manchester and to Moxomana. Just come out then. I'm quite old and it was before the internet as well. Again, might be surprising to some listeners that there was a time without the internet. There was a time without the internet. And, professor Tony Howell, I was working with Sir Louisa. We just want you to write a little simple fact sheet about what is to moxiphan. That's okay, that's great. That's not going to take me 10 weeks, though. Anyway, what I did is I started to interview different women and I sort of said what do you think counts for me? And they said it just means there. No one, it doesn't actually. Let's just talk about what it actually is. And what about chemotherapy? Well, that means hair loss and vomiting. I said but what is chemotherapy? It just means chemical drug. That's all. You write down the word. I didn't know that and I said well, you've had your lymph nodes removed and your arm. What do lymph nodes do in the body? Well, I don't know, they just collect cancer. That's all they do. So I just said to, went back to Tony and I said look people just don't know anything. Actually. He said don't be ridiculous. I said right, your next patient that comes in, you say to her what is breast cancer? And then he did. And she looked at this lovely professor and said well, I don't know, it's just something that's going to kill me, isn't it? And obviously, as you know, most women who have breast cancer do not die from breast cancer. The prognosis, even in the 80s, was really good, but even now it's so much better, which is wonderful, of course. So I said am I going to write a series of booklets? So that was the start of my medical writing career, actually, in Pam, people with knowledge, and I thought, wow, how wonderful actually, so they can be involved in this consultation. Really well. And then the whole thing we know that estrogen receptors are all over our body, there, in every cell of our body, and that's why estrogen is such an important biological active whole way. So if I chop off my little finger or if I take a bit of skin out of somewhere, if I take a muscle out of my leg, it's going to have estrogen receptors on it. So if I have a cancer it's likely to have estrogen receptors on it. If I test for those receptors, estrogen receptor negative breast cancers are the ones where they've mutated more. They've lost their receptors because they've become more abnormal. So actually, as you know, estrogen receptor breast cancers actually do are associated with the worst prognosis with most women who have them because they're more aggressive tumours, whereas the estrogen receptor ones feel like are the better ones. But people think they've almost developed receptors and it's been caused. People that I spoke to said oh, my consultant said it was an estrogen driven or estrogen caused breast cancer. Well, how can it be? If estrogen caused breast cancer, we would see it far more commonly in young women who have high levels of estrogen in their body than older women. And we also need to remember that before the WHO study, the big study that scared everyone away from HRT before it came out, hrt prescribing, certainly in the UK, was double what it is now, but breast cancer incidence was about one in 12 women. Now HRT prescribing has more than half. Yet actually breast cancer incidence is about one in seven. So we can't really blame HRT for all the breast cancers, even if you knew nothing about science at all. But then you have to look at other risk factors for breast cancer. So we know getting older increases our risk of any disease, especially cancer. Some family history can increase but because breast cancer is so common, most people will have a member of family who's have breast cancer in it. But the other risk factors is so-called modifiable lifestyle risk factors. So people who are overweight, people who don't exercise, people who drink moderate amounts of alcohol will have a small increased risk of breast cancer, like they have a small risk of any other cancer. And we know that obesity is overtaken. Smoking is the commonest cause or risk factor for any type of cancer and that's because all these lifestyles, if you like, increase inflammation in the body. It's got inflammation. We're more likely to have a disease, more likely to have cancers. It's just a fact, unfortunately. But actually estrogen is very anti-inflammatory. That's why it reduces risk of inflammatory conditions such as heart disease, diabetes, osteoporosis, dementia. Even clinical depression is an inflammatory condition. So when you look at the WHO study, what's very interesting is a group of women that had a hysterectomy who only had estrogen had a lower incidence of breast cancer diagnosis and a lower incidence of death from breast cancer. And also women who had developed breast cancer on HRT actually had a better prognosis. So a better outlook for those women that had never been on HRT. So there's one thing being diagnosed, there's another thing dying from the disease. If you see what I mean, they are quite different. That's sort of the history about. Hrt doesn't really cause breast cancer. The WHO study that looked at the synthetic progestogens as a small increase basically wasn't statistically significant. We don't usually prescribe the synthetic progestogens. The natural progestogens has never been shown in the study associated with the risk of breast cancer. Even the risk with the synthetic ones is lower than any lifestyle risk, so it's still small. When you look at women who have breast cancer, wouldn't it be nice if we could go to lots of randomized controlled studies and say, oh, the group that took HRT either did worse or better. We don't have those studies because they've not been done and a few that have been done were stopped early because they were being done around the time of the WHI study, everyone was so petrified about HRT and also they use the older types of HRT anyway. So you're comparing apples with pears. Some studies have actually shown there is some benefit and it sort of makes sense because these students are so anti-inflammatory. It also induces something called apoptosis, which is programmed cell death, and there is some thought and a bit of evidence that if people don't have estrogen for a year or two after their breast cancer and then take estrogen, it might actually lead to better prognosis. And with automoxifone came out, they used to actually give a high dose of oral estrogen to women who had quite aggressive cancers that were quite actually pictorially fungating breast cancers coming through the skin. There's no other real treatments, there's no other real estrogen at high dose and you could literally see photos of the cancer becoming smaller and improving. But women didn't like high dose of tablet estrogen of course. That made them feel sick and increased their blood pressure. They were limited. Obviously that doesn't happen with these twins again. So the other thing is is that whether women has had breast cancer or not, so for example, for you you've still got an increased heart disease or stuporosis, diabetes, dementia. There's a men and girls or women, and I'm sorry that is alarmist for people, but it's fact. All I'm doing is negotiating facts. I'm not making this up in my head, so then it becomes to what we've talked about. The Lawsonist podcast is about choice. So I see women in my clinic who have literally been suffering for years with their equality of life. They're getting recurrent, un retracted infections. They've been diagnosed with osteoporosis. They're more worried about their mental health and their memory and everything else than they are having a recurrence of breast cancer. So then it's up to them, not up to me. I'm not living their life every day. I'm not with them when they're waking up three or four times a night with horrendous bone and joint pains. I'm not there watching them at work, not being able to achieve you know. I'm not there saying that they can't have any sex with their husband and their partner might have left them. I'm not there picking up the pieces when they have an osteoporotic hip fracture. But the oncologists in there saying do not take HRT, do not, do not, do not. And often when they're looking at the data they're looking at taking like an estrogen blocker or not having HRT might reduce the risk of recurrence by about 2%. Well, if you're in that two out of 100 women, then they're playing. That's gonna be great for you. But if you're in the 98 women out of 100 who are taking treatment, what's gonna give you no benefit but actually possible harm to your quality of life and maybe your future health then it's up to you to decide. And when you talk about statistics they're so hard and you know I don't care if I was one of those women, about the other 99 women. If I'm in a group of 100, it's about me. But actually I also want to know about my quality of life. And some women we see who have breast cancer say do you know what, nuri, I would go through all that treatment again. I would have chemotherapy, I would have radiotherapy, I would have a mastectomy, because that's a walk in the park compared to the men and boys. Well, how can I as an adult who is a trained healthcare professional so sorry, I'm making the choice for you you can't have this evidence-based treatment. So we've been working very hard. The group of us that have been together regularly spent hours on this, doing something called the Delphi process, where you go through the evidence and you come up with consensus statements, and we've been looking specifically about women who've had breast cancer. So we've been meeting with oncologists, radiotherapists, breast surgeons, breast nurses, other menopause specialists who've had some patients on the group. We've had a urologist who's very academic on the group. His wife actually had breast cancer and had eurosepsis a few times while he even realized about her hormones. And we've worked through the process over about 18 months. So we've just about to submit it to publication. So we've got a series of consensus statements that we've all agreed on and, as you can imagine, it's my card. I think clinicians still all agree but actually they highlight the uncertainty and I think that's very important to share that uncertainty with Kate. And we've also just said the obvious like women do have an increased risk of osteoporosis and they will benefit from HRT for their other health risks. And we don't know it might increase the risk of recurrence. But we can share that might or it could with the patients. Somebody I know who worked with me was talking to another doctor at a meeting the day before yesterday and they were been rude about my clinic and she said hang on, I work at that clinic. What's your b for? What's the problem? So you know well that you just give HRT to everybody who's had breast cancer. So we don't actually. We listen to them, we understand what's going on, we spend time with them and actually what we always do is give them a free follow up appointment two weeks later to talk about any decision that they've made. We have a shared decision making document that they can try and, if they want to, to show that they feel really empowered, we give them lots of information. So we don't just prescribe HRT without thinking about it. Of course we don't. But what's really important, as you know, as a patient, is being listened to and being understood. And the other thing with HRT is it's completely reversible. You know, if I prescribe HRT for a woman today and she takes it and then she decides to stop, it's out of her system the next day, so she's completely in control and I think that's important. People think it builds up.

So it clears out of your system that quickly.

You just look well. If it's used as a patch for girls with a skin, yes, so obviously some have an implant.

Yeah, that's different.

It uses implants and one thing that we know. So you know, and I think this is really really important, especially as we know, that women who have breast cancer live longer and most women who have breast cancer die from heart disease and dementia, not from their breast cancer, and that's about HRT. But if you think about vagina hormones, lots of women who have breast cancer or are on treatments for breast cancer who have any recurrent urine tract infections really sore, painful, gyneval or symptom no, these women are denied Gyneal hormones, we're gonna say, and all they do is, you know, stay with the vagina, they don't go around the body. So we need to be looking really holistically and of course, we spend time thinking about alternatives and there are alternative medications that might help the symptoms. They're not gonna strengthen bones, they're not gonna reduce risk of heart disease. It's just looking at the whole picture really.

Yeah, it's fascinating and it's so encouraging for me to know that you're been doing all of that, that research. You know you're working with other clinicians and you have some evidence that you're going to be publishing soon, which is great. I would love to think that we will be in a place soon where women can have those shared conversations with their healthcare professionals, and they are, yeah it feels like things have changed.

So I get sort of direct messages from people on Twitter, some of them who are quite abusive, who are other healthcare professionals, but there's and some of them are oncologists saying how dare you, what are you doing? But then when I've said, oh, should we just talk? And I'm so interested and I'm like, oh, actually I hadn't really thought like that, I hadn't really thought there's more to the woman than just a breast cancer not just I'm not trivialising breast cancer, but you know. And so actually there has been a shift because they say, well, look in our clinic we keep getting phone calls, we keep getting less of GP's. They lady would like to talk about maybe stopping her aromatics inhibitors or changing to demoxifen or looking at treatment choices. And then the more sort of hostile doctors who, like this medical patriarchal system, find it very challenging. But there are others that go oh, actually this is really interesting. I've not thought like this before and I know when we produce these consensus statements there'll be some doctors that will absolutely hate us, but actually I think there are others that will find them quite reassuring and patients will as well, because it's just basically sharing uncertainty and we have to think about what the shared decision making and informed consent mean, and it means that we're allowed to share uncertainty with our patients. They are allowed to make a decision that might be different to decision that we decide for them, and that's really, really important, I think. And there are risks of denying treatment. One of the things we're sort of working on is thinking what are the risks of not taking HRT and I think even for you, as someone who's had breast cancer, you do need to have a bit of time to think what are the risks of not taking it, because I know there are benefits. The same as you should be thinking what are the risks of never exercising? Or what are the risks of having a McDonald's every day? I still see someone in my clinic a few weeks ago who'd had breast cancer 12 years ago and even her oncology said your risk of breast cancer now is the same as anyone who's never had breast cancer, so why are we denying those women hormones? And then we see a lot of women actually who have breast cancer at a young age. So they've had a medical menopause because of their treatment they were given and then the periods have come back when they've been in their late 30s, 40s and the oncologist has said oh, you'll feel a lot better now, your hormones have come back. And then, age 47, 48, the period stopped, they become menopause or have symptoms. Come and see us. But actually the irony is they could have carried on having their periods for another three, four years until they were in their early 50s, and the oncologist would not have batted an eyelid at all. Because suddenly I'm giving no dose of hormones back. It's like I'm giving the worst thing ever, and so we have to sort of think it just doesn't quite make sense actually.

Yeah, there's obviously. I imagine there's still a lot of fair hangovers from the WHI that are at play here, that misogyny and patriarchy and all of that that is still just at play here underneath rippling away.

Absolutely there is. And one of my friends has just been diagnosed with a very small breast lump. It's not, she hasn't had, she's had a normal ultrasound, so she's waiting for an amalgam. But the breast consulted said to her oh my goodness, you've been on HRT for six years. Well, that's a real concern because the risk really increases. And I said to her but actually it doesn't, and it starts. He's using older types of HRT and you know her mother had breast cancer. She's got a. You know she drinks with her mouth. She's otherwise bitten. Well, but actually how can you just say that? You know and I hear it a lot from other people you know when they've been diagnosed with breast cancer, your HRT will have caused it. Well, that's awful. It's a disgusting thing to say to anyone to put blame and shame on them. And you know, even people who smoke not every smoke is going to get lung cancer and not every lung cancer diagnosis is due to smoking. But the other thing that really upsets me, though, with this is that if I was a man and if I had prostate cancer, that was a small, localised prostate cancer, they would remove it. They might remove my prostate glands, but they wouldn't give me adjuvant treatment, it wouldn't block my testosterone in my body. One of the reasons they don't do it is because there isn't really solid data that it reduces long-term mortality, but also because the men would feel lousy and awful. And when they give testosterone blocking drugs to men it's often only for two or three years, whereas now there's a move to give a rivetase inhibitors for 10 years to these poor women and you just think well, there's a real gender inequality here. Just breast cancers get treated by removing them surgically. Maybe the radiotherapy and the chemotherapy does have a small improvement. You know the estrogen blocking drugs do have a very small. I'm sure you know the predict tool that you can put in your type of cancer when you have it all at and you see these graphs and if you see the percentage improvement with hormone treatments, it's very, very, very small and it's balancing that with well. Yes, people will die from other reasons as well. It's not all related to their breast cancer, but there is, and I can't find an oncologist that will explain to me rashly why men and women get treated so differently. When they've had a cancer, you know their breasts have had to their prostate and I think that's something we need to really address because breast cancers are so much more common than they were and a lot of women are over-treated and over-medicalized and we know a lot of women will die with breast cancer, not from breast cancer. You know, if you do autopsies in older women, up to about 10% of women will be found to have breast cancer. It's not affecting them, it's not being even diagnosed. It's not the reason that they died. But the more we do the screening, the more people are aware. Of course that's a good thing, but we have to realise like what do we treat you? Are we just treating it with a sledgehammer? And it's difficult. You know breast cancer the word cancer is really scary. But if you think about osteoporosis, if someone's had an osteoporotic hip fracture, it's a 20% mortality in the year after having it. So one in five women will die after having an osteoporotic hip fracture. Again, it's the scariest patch, but I'm just re-editated with that Now. Breast cancer diagnosis is not associated with one in five women dying in the year after. Yet women who are denied HRT have an increased risk of osteoporosis and I'm not saying they all will get it. But it's just things that we need to be aware and think of and in medicine we work in silos. The oncologists will look at their success rate based on breast cancer recurrence or mortality. They won't include even a lot of the studies don't include other outcomes, which is not to be an osteoporosis. The osteoporosis specialist will only look at the bones. They won't look at the bigger picture, and this is where women are being shoehorned into one or other specialist Without someone taking a step back and really looking at that person as an individual, and that's what's missing a lot with this joined up care. That should be happening.

Yeah, and I think that that is a great way to kind of tie our conversation up in a little bit of a bow, isn't it? And that is the theme that has kind of run throughout our whole conversation is that every woman deserves personalized, individualized care. That is a shared conversation between her practitioner and herself.

Yeah, I totally agree. And the other caveat I would say to her and is that people can change their mind at any time as well. So what you decide today might be different, tomorrow, might be different in a year's time. So just because you've decided no now doesn't mean that's no in a year's time, or vice versa. You might have decided yes to a treatment now and then change Like we change our cars because we've, you know, always try to put mud or a different person. We move house, like we change jobs, some people change husbands. The situation is absolutely fine. So you know, and I think that's everything.

Nothing is set in concrete and I think that's really important to yeah, I think that's a really good lens to put on it, and I think it's something that's not spoken about enough is that it's something that you can start and then you can totally change your mind about, and there is no long-term hummed up.

No, I often say to women you know even whether they've had breast cancer or not. You know you can try some hormones and because there's no diagnostic test that's reliable for the perimenopause or menopause, you can try some hormones and then we'll review you in three months. See how you feel. You're feeling no better at all and every day you're worrying about breast cancer. Don't take it. Then it's surprising number of women that come back and go wow, my life's been transformed. I can sleep, I can think, I'm sitting in the shower, I'm just happy I can work. I can you know, and I just would never stop it. I just can't put on shoes.

Personal choice, I think, is got to become much more important. Education, personal choice and individualised care Totally Amazing. Louise, thank you so very much for our conversation today. I have absolutely loved chatting to you. I could chat to you for a whole lot more time.

I don't know if our listeners would enjoy it as much, and I'm sure you have a whole day ahead of you that you need to get on with, indeed, but it's been great, it's really lovely, and thank you so much for you sharing your story as well, because I know that's going to help a lot of people and it's not always easy talking about yourself, so thank you.

Thank you for listening today. I am so grateful to have these conversations with incredible women and experts and I'm grateful that you chose to hit play on this episode of Dare Menopause. If you have a minute of time today, please leave a rating or a review. I would love to hear from you, because you are my biggest driver for doing this work. If this chat went way too fast for you and you want more, head over to StellaWomencomau slash podcast for the show notes and, while you're there, take my midlife quiz to see why it feels like midlife is messing with your head.