The Dr Louise Newson Podcast - 185 - Exploring experiences of menopausal women after breast cancer, with Dr Sarah Ball

Episode Date: January 3, 2023

GP and menopause specialist, Dr Sarah Ball, makes a record fifth appearance on the podcast this week to discuss her work exploring experiences of menopause care in women who have had breast cancer. The experts discuss findings from a recent survey carried out by Sarah and the Newson Health team to highlight how things have improved in recent years and identify some of the ongoing needs. You can read more about Sarah’s survey and other recent menopause research carried out by Newson Health here. Follow Dr Sarah Ball on social media on Instagram and Twitter. View the breast cancer booklet here.

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-Avon. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based, information and advice about both the perimenopause and the menopause. So today on the podcast, I have somebody who's been with me on the podcast four times before, which is a record actually. So back again, I've managed to persuade Dr Sarah Ball to join

me to talk about some of her work. So thanks, Sarah. It's a pleasure, Louise. So Sarah's a GP and menopause specialist like myself and have been very like me, I think, is it fair to say, overwhelmed with stories that we hear day and day out from menopause and and perimenopause of women, which were not under our radar before we started doing so much menopause work. Is that fair to say? Yeah, I've been amazed at how many people have come to the surface and described their struggle and their suffering and their lack of knowing where to turn. So it's trying to convey that to other people to understand. how to try and help these people.

And I think what's really hard, I mean, we're talking today, and a publication has come out in the BMJ, being quite vocal, actually, and quite sort of anti-women asking for HRT. And also there's this undercurrent that some of the work, certainly, that I'm doing, is undermining doctors and being quite negative. And I think that's really sad, actually, because I'm sure you agree, every healthcare professional wants to do the best that they can, but it's based on the knowledge that we're given as well.

And, you know, this is going off topic, but I remember when I did my minor surgery training to learn how to suture to take out moles and things as a GP. And I thought I had done a really good job. And there was this little square with those sutures that you could take home, you know, like your homework to show at home. So I went home and showed my husband, who many of you listening knows is a surgeon and I said,

look for, look at this. And he just said, that is dreadful. I would never use that type of suture material and I would never do that sort of stitch. Please do not go near anybody. So then I thought, right, okay, I'm never ever going to do minor surgery. I did lots of joint injections and aspirations, but I never used suture. And he was right. I was terrible.

But I thought I was doing a really good job actually in my little course. And I think that's probably the same in menopause, isn't it? There are some healthcare professionals who sadly haven't had any education and they think that it is wrong that women are asking for HRT and they also don't think that women's joint pains or headaches or just their mood might improve with menopause because they've never been taught. Yeah and I used to think I was good at menopause care because I had the attitude that if a woman was struggling with symptoms that I was happy to prescribe her HRT I was reasonably confident to prescribe her HRT but looking back now,

I realized that I was waiting for them to tell me that they were menopausal. And of course, I wasn't looking for it because I presumed women would know, because I presumed they would know hotsweds and flushes means menopause. So I was quite happy in that sphere to do that. But actually all those other patients I was seeing that had anxiety, depression, migraine, skin issues, genital urinary issues, I wasn't joining the dots. And so that's most of the battle. There's no point being confident in treating something if you don't pick it up as a diagnosis in the first place.

So, yes, it's medical education is crucial. And doctors are, and all clinicians are really time pressed and pressured. And good education and timely education and efficient and simple and relatable and practical education is absolutely crucial. So, you know, you don't know what you. don't know, do you? And that's what you've always tried to change. Absolutely, too. And I think very much, you know, your work as a clinician, my work as a clinician is putting the patient first and allowing them to be very much involved in decision making. And again, if they don't know, they don't know what to ask for. And I know very, I mean, you've worked with me, which has been wonderful at the clinic for so long

now, but very soon after we started hearing stories that we'd not really heard before of such long suffering, we started then to see women who'd had breast cancer, who had sometimes actually undergone a double menopause. So a menopause, maybe because of their hormonal treatment for their breast cancer, then maybe they've become older. Their periods had started, and then they went through another menopause. Or some of them, it was just once, but very harrowing. And they came asking for some advice, and clearly advice is fine. And then they started coming and say, well, I've tried these alternatives. I've tried lifestyle. I've tried medication. I've tried some psychological treatments and I'm on my knees and I would really like to try some hormones and I

remember us all going oh gosh you know what do we do and we've talked about it we've gone through a lot of evidence and some of you would have listened to the podcast I've done with Sarah Glynn and Tony Branson again I've done two podcasts with him now talking about some of this work but it's really harrowing when you've got a patient in front of you and you're thinking well no I can't do that and they've been told by their oncologist or another menaceport specialist often that they cannot have a treatment that you think, well, we know it might help, some of your symptoms if they're related, but we know for everybody, then they're going to increase their future health. So reduce their risk of heart disease and osteoporosis because there are benefits from HRT for

everyone, aren't there? So you've been doing a lot of work, actually, not just listening to these women and helping them, but taking it a bit step further, haven't you, with the survey that you've done? And I'd be really keen to him or, and you just to share about the survey that you did, if that's okay. Sure, yeah. I think, I mean, I did a survey originally a couple of years ago when your clinic had only been open about 18 months because we were seeing women coming with breast cancer. And I think we were all extremely moved by the stories we were hearing.

and wanted to make sure we were giving them all the right information about all their options and that we were listening to them. But also there was a degree of surprise, I think, that we had so many women starting to come to see us. And I felt it was really important to try and find out what their experiences had been before they came to see us, sort of say, you know, these women aren't just having a knee-jerk reaction of, oh, I know I'm going to go to that clinic that I've heard of and get some help. You know, there was stories and stories and years

of what had gone on before, and I wanted to find out more about that. So I did that survey, and we talked about that in a previous podcast, and now sort of two years later, we've got even more patients with breast cancer. In fact, when I ran this survey, which was just before the summer this year we had over 450 patients on our books that have had breast cancer or DCIS, which is a kind of a pre-invasive condition. And so we sent out a survey to all of those patients. It was all anonymous. And 175 people responded. So that's actually quite a good number for an online survey of this type. And I wanted to know lots of things, really, but I wanted to try and think back. And I know it's difficult when you've been through cancer, your memory is often, you know, you can't really

think it was all a bit of a blur at the time. But I wanted them to see, could they remember when they had that initial diagnosis and they were having their treatment planned for them or with them, was there any mention about the menopause as anything that would be at all influenced? And only one quarter of the women that responded could remember any discussion about that. So in other words, three quarters of them didn't realize that menopause was something that had any bearing on their story. And I kind of get that because as a member of the public, if you're faced with the diagnosis of cancer, it doesn't really matter what type of cancer. Your prime thing at the time is, oh my gosh, will I survive? What treatment am I going to have?

How is that going to affect my immediate health? However, the menopause is very often induced, worsened, brought on by. treatments for breast cancer and therefore it should be factored in to longer term planning. And that might be something that you have a discussion about at the time of diagnosis. It might be something that you need to come back to later on either by discussion or having some written material or just something that will remind the woman that in six months or six years or 16 years, if she's struggling that she's got some information and somewhere to know where to go for help. And that really is where the system in the current NHS for many people,

unfortunately seems to fall down. And so carrying on with this survey, I asked them about, for example, what types of treatment they'd had and half of our respondents had had chemotherapy. And we know that chemotherapy is very toxic to the ovaries and so it can make you menopausal for either a couple of years and then sometimes your ovaries recover or that may be it. It may sort of finish your ovaries off. And so many women assume that all of the symptoms they possibly get like brain fog, joint pains, mood changes, hot sweats, flushes, they put it all down to the chemotherapy or the stress of having a cancer diagnosis and don't necessarily realize that this is. is actually the menopause and may or may not be a permanent feature.

And so only, well, less than half of those that had chemotherapy had been told that menopause may feature. Quite bizarrely, 14 of our respondents had their ovaries removed of part of their treatment, but nine of them weren't told that that would also induce menopause. Now, maybe to you and I, that's completely obvious if you remove the ovaries, you're going to be menopausal. but it's not actually obvious to most of the public. And it's a huge thing to have your ovies removed. They might be tiny little grape size features, but they do an enormous amount for how we feel now and for our future health. And so how you can not have a conversation about that is worrying. And then the most common treatment after breast cancer surgery is often the drugs that are used to block estrogen.

and they can induce all sorts of symptoms and problems. And again, you know, it has its role in helping slightly to reduce risk of recurrence, but that can often be a very slight improvement. But actually the symptoms that it brings about and the complications are very rarely spoken about. So most of the women remember being told how beneficial these drugs would be for their future risks from their breast cancer. but not many of them remember being told that there were any risks or possible side effects and very few of them recall any mention that menopause would also be impacted by blocking estrogen.

And so again, I think by this we're not in any way trying to criticise breast cancer surgeons or oncologists. Not at all. We're just saying there's something drastic is missing here because in order to treat the condition of breast cancer, you actually have a knock-on effect on the rest of somebody's health. And those things are important. And you can't adequately counsel a patient about cancer treatment if you don't tell them about all the possible short and long-term conditions. So the survey shows that that is a problem. It is a problem.

I think what's very interesting is that for lots of people, menopause just means stop of periods or loss of fertility. So when you're faced with a diagnosis or a woman's face with a diagnosis of breast cancer and hearing words such as chemotherapy, radiotherapy, surgery, well, menopause is just, oh, goodness me, that's nothing, isn't it? And even, you know, some of the oncologists don't have training in the menopause. So they think it was a few hot flushes. It's not really, they trivialise it.

And for some women, it might not cause many symptoms, but as we know, those hormone reductions can lead to health risks as well. but actually for those women who think, well, their brain fog and their bone pain is a chemo brain or the bone pain might be a bone metastases and they really worry about that. And a lot of women I see in my clinic and you might be the same have seen an oncologist before, but they know that they're really busy so they have often seen other people, maybe a junior doctor or a nurse. And the focus has been all about their breast cancer, you know, have you noticed a lump?

How have you been? You know, and that's all they want. They're having, which is, don't get real. I'm not undermining it. And I know you're not either, but, you know, they've had their mammogram. They've had the check. And that's good. Their breast cancer has not recurred.

Tick that box. And a lot of women don't even have time to vocalize their symptoms or they often don't realize their symptoms might be related to the menopause. And that's something that you were finding as well, isn't it? Yeah. I mean, for example, with like aromatase inhibitors, we know that joint pain, is a really common and can be a very severe effect of aromatase inhibitors. And yet most people, the public and healthcare professionals alike,

probably wouldn't put the two together. So if you're an oncologist and you've got a busy clinic and a woman a few years post her breast cancer has come in and she's saying, oh, my joints are aching, they probably aren't likely to have maybe the knowledge or the time to, you know, process that information. and to sort of direct her somewhere helpful and often, unfortunately, what ends up happening is women in secondary care or anyone in secondary care, where it doesn't seem to come under the

exact remit of why they're there, are then sent back to the GP. And the GP, quite understandably, is likely to be nervous of any cancer-related possible effects or treatments or, you know, HRT because of everything that we've maybe been mislearned about menopause and HRT. And so these people, a common theme from a lot of these ladies in this survey was saying, well, the oncologist did their job and the surgeon did their job. And now, you know, no one seems to now want to help me, but I'm actually feel worse than I did when I was having my breast cancer treatment. And so we can't expect GPs to be able to manage that complexity.

And we do need a team approach. So in my ideal world, you would have in every breast cancer clinic, you would have a breast surgeon and an oncologist, probably a breast cancer specialist nurse and a menopause specialist. Because actually if all those were talking to each other and crucially to the patient, then you're going to have a much more cohesive plan going forward. But at the moment, that's all bity and messy in most cases. It is.

And we do see, don't me? A lot of women, as I said before, have been told you can never have HRT from their oncologist. And then maybe 5, 10, 15, 20 years down the line, these women are really struggling and say, I can't keep living with these symptoms of the menopause. And it's not really appropriate always to refer them back because we know that the clinics are really busy and everything else. And quite often I've spoken to oncologists. And when you talk through, then actually they're very understanding and say, oh, gosh, I might have said that 20 years ago or 10 years ago or whatever. Or one of my colleagues might have said something.

But obviously things change with time. And, you know, we're doing a lot of work, as many of you know, sort of looking at the evidence, which is very limited. But then we need to look at the evidence of benefits of HRT, including benefits to quality of life as well as future health. And certainly a lot of women I see are more worried about. deoporosis than they are about recurrence of their breast cancer. Yeah. And then I think as a clinician, it's very hard to go against what a patient wants, isn't it, when they're really consenting adults.

Yeah, it's, you know, we've got to start listening to patients and seeing them as not just a breast cancer survivor that they have usually these days a very good prognosis and they're likely actually to end up dying of something else one day and that we can't just completely ignore all there other parts of us which make us a healthy individual. So yeah, we've got to start listening. We've got to start involving women in the uncertainty and the decisions and not being, you know, paternalistic medicine is a thing of the past now. Absolutely. We often don't have the infrastructure to provide proper shared decision making. Yeah. And I was looking at the, Millen, which I'm sure you've all heard of. And one of their sort of mission statements is to live

life as well as possible, you know, beyond cancer. And it's absolutely really important, isn't it? And a lot of women want to live rather than exist. And actually, a lot of women I talk to almost, they don't want to forget they've had breast cancer, but they don't want to be defined as a woman who's her breast cancer, they want to be defined as a woman who's a managing director of a company or a woman who's got three children or a woman who's a wife or a partner to somebody or whatever, but it's something that's happened to them. And I don't know whether it's breast cancer more than any other cancers, but it does seem more than any other condition. You know, if I'd had a heart attack 20 years ago, people wouldn't worry about what I did really because it's very likely that my

heart's quite strong to keep me living 20 years. But with breast cancer and it, it is, quite emotional. And I think some of the work that we're doing in this space, we get attacked a lot. And actually, what we're doing is we're not there saying, I want to increase your risk of recurrence. We're not doing that. We're saying, I want to improve the quality of your life. And actually, maybe the duration of your life as well, because we know that most women who have breast cancer die from heart disease, taking HRT can reduce that. But we're not even saying every woman who's had breast cancer should take HRT. We're saying these women, and we don't know the numbers, it might be a very, very small percentage, are really struggling with their

menopause after breast cancer. And those women deserve to have the same level in care and attention as any other women who are struggling with their symptoms, don't they? Yeah, there's, you know, there are alternatives to HRT, and for some people, they're very effective. And some patients that find their way to our clinic have tried some of them, but actually some of them haven't even had any information about those. So, you know, if people think that, you know, we work in a clinic where we just talk about HRT and nothing else, they're very wrong because actually having time to listen to these patients and talk about their lifestyle and things that they might just be able to do on a day-to-day basis with exercise or diet may be absolutely crucial, or there might be other therapies,

or non-hormonal containing therapies that might be useful. For example, in this survey, 86% of the patients had genitourinary syndrome of menopause, but actually less than 30% of them had been offered vaginal lubricants or moisturisers. Now, they don't contain any hormones at all, but if that hasn't even been mentioned, then there clearly is a big need, isn't there? One positive, I think we should take out of the survey, is that about between 30 and 40% of those women had been offered some vaginal estrogen. Now that's still, you know, inadequate number in my mind. However, it's a lot better than two years ago when we did the survey when it was about 10%. So I am trying to take the positive out of that, that somewhere in the last two years, maybe the message has got out there that vaginal estrogen is an appropriate choice for women with breast cancer

because it's very safe and effective and can be life-changing for these women. Yes, and that is really important. And I think, you know, there are alternatives, as in prescribed alternatives, that can be useful for some women, but they're often limited by side effects. And they'll often only really work for some symptoms like the vasomotor symptoms of flushes and sweat. So they won't help strengthen bones or whatever. But one of the drugs that's been used, and I just recently found out that 2.1 million pounds of government money is being spent on a study looking at giving either venal vaccine, which is an antidepressant, as many of you know. or oxybutinin, which is a drug that I used to prescribe quite a lot actually in the 90s and early 2000s for women who have urinary symptoms because it helps sometimes with urinary symptoms, but it's really limited by its side effects because it works on something called the muscular receptors.

And if you have these side effects, it can cause dry mouth, dry eyes, dry vagina, of course, because it affects those memories. But also there's an increased risk of dementia in women and men actually who, use oxybutin it confept memory. So I have a real issue actually that 2.1 million pounds is being spent on giving women these drugs that might not actually make a big difference. And I've heard that there's a bit of recruitment problem with this study. And I'm not surprised because women don't want them. And my daughter recently, some of you might know, has my old disorder, has horrendous migraines, but she's also has asthma. And she was given an inhaler recently. And it contained something that was an anti-musculinic. And she kept,

phoning me for six weeks and saying I feel bad, my migraines have worsened, but I feel very low in my mood. I feel terrible. I can't remember things. My skin's really dry. I can't focus on my phone or my computer. I can't read music and she's a trombonist. And I was hearing all these symptoms just on their own and I kept thinking, oh, maybe she's a bit stressed or maybe it's related to her migraine because migraine can cause systemic effects. And then I, for winning about us, I sat down with Rebecca Lewis, as you know, who's a clinical director with me saying Rebecca, I'm a bit worried about Jessica. And she said, what inhaler is she on? And I told her the name. And we both looked at each other and went, that's an anti-muscular in it. No wonder. So I told Jessica to stop. And it took about

two weeks for her memory to come back. And last weekend, I was telling her about this study I'd found giving this drug. I said, it's very similar to your inhaler, but it's a tablet form to women who have had breast cancer. And do you know what she did? She burst into tears and said, mummy, you can't give that drug to people. I cannot tell you how horrendous it's been. And I'm not saying everyone has those side effects, but they are quite common side effects, aren't they? And oxibutinin, we don't use so much for urinary symptoms because there's more refined drugs now, aren't there, that don't have such side effects. So I feel like we're going back in time a bit for women who've had breast cancer, which isn't really pushing the needle forwards. And I've

spoken to a lot of oncologists to say, can we not do a proper study with HRT? And then they've said, well, there's no funding because HRT is cheap. And, you know, all the cancer drugs are expensive. So we're doing more cancer drug studies. And it's, but if you're looking at population improvement, isn't it better to give something that's cheap that we know is safe? And they said, well, recruitment would be a problem. Women are scared of hormones. I said, I don't think there would be a recruitment problem, actually. But it seems, I mean, I know you're frustrated. as well, aren't you? It's very frustrating that we can't move science further in this area. Yeah, we need more trials looking at actually what happens if you replace the hormones,

but it's so difficult to do studies like that these days. And in fact, I think it's pretty difficult to do any sorts of studies in this day and age with a population who are generally more empowered and generally have a good idea of what they want because women, well, anybody can access quite a lot of information now on the internet and already has quite a good idea of what would suit their needs. And so they don't usually want to be randomised into a trial where they don't know whether they're going to get the drug or the placebo option. So we talk all the time that we about evidence-based medicine and, well, is there a trial that proves that? And actually, sometimes there is, sometimes there isn't. But actually,

the other two crucial parts of evidence-based medicine are what are actually the views and preferences of the patient, and that's, you know, what we would always advocate spending time with. And thirdly, is the clinical expertise. And I couldn't sleep at night if I saw patients with a history of breast cancer and didn't talk to them about all the options, which includes HRT, because by my experience over the years, I have seen hundreds of women have their life transformed and thank me and be forever grateful that they can. I had a lady the other day who said, oh my God, I've just been on the underground. I haven't been confident enough to do that for years. I was able to drive abroad. You know, little things like that might sound like nothing to somebody else,

but actually that can, you know, enhance their life no end. And actually if it keeps them alive, which, you know, sadly, we have patients that filled in the survey who have taught quite openly about their plans for what they would do if they hadn't had an appointment with us in terms of feeling like they couldn't go on. So I will offer HRT on an individual basis because of my clinical experience to date. And I don't care if there isn't a study that proves beyond all doubt that that's fine because my training as a doctor enables me to do that and I will defend myself mercilessly if I had to. And I think that's really important. I mean, just for those listening, just for reassurance, really, we collect the data from every single person who's had breast cancer and

Dan Rees on our clinical research lead is looking at everything and every year we're following people up and I'm hoping with time actually will show that these women do have good outcomes and I'm sure we do. And it's very important. You know, we do a lot of training and education and we spent a few hours recently at an education event just for our healthcare practitioners. And it was actually really well received, wasn't it? Sarah, you were presenting and we had others. They had an oncologist there and another specialist. And it's really useful for anything in medicine that we can discuss uncertainty. And I think when you're young, you expect doctors to know everything. And I think it takes a lot of clinical experience, like you say, to be able to share uncertainty with patients. And to say,

look, I don't know whether this is harmful or good. I know on balance, these are the benefits. These are the potential risks. And, you know, what do you think? And also that you can change your mind at any time as well. You know, every woman that you've seen you've started on HRT, you haven't made them sign their life that they're going to take it forever. They just often try and we review and they, it's jointly done together.

So I think it's really important that nothing is a flippant decision. It's done with a lot of consideration. And support, actually, we give a lot of support to our clinicians, but also women have a lot of support. Often they will go and talk to their family or their close friends before making a decision as well. And that's really important, isn't it? Yeah, it's, you know, I could see three people in a day

and they might all have had the same type of breast cancer at the same stage with the same pathology results. And I might go through the options with them. And we may have three entirely different outcomes. outcomes. One may choose to use HRT, one might not, one might choose to do something else, one might want to change other Medicaid, you know, and that's fine. I've done my job if all the outcomes are different. Yes, absolutely. It's so important. And, you know, this conversation is really just beginning. We've got a lot more that we're doing. And Sarah's on this clinical steering

group that we've got together doing this stealthy process. And it's exciting because I think it's trying to show that we're not neglecting women because we don't want to neglect anyone. And so I'm really grateful for your time doing the survey and being involved with all this, Sarah, and involved in so much of the education work that you do. And there's just so much, I know many a time, many an evening, we both feel completely overwhelmed. But also, I feel like, you know, working together, working with others, we're making a difference. And that's really important.

So before we finish, I know you'll probably done your homework because you're so, so diligent but three take-home tips I'm going to ask you to choose what the take-home tips are because you've probably written them so you say what your three take-home tips are you know me so well I thought what I do seeing as it's the fifth time is I would give you three quotes from the survey is that okay do you know that's perfect thank you so the first one I'll start with the most difficult one I suppose so one lady said at the point of making the appointment with yourselves I was working on an end-of-life plan including what I would need to do before the end of my life and where I would end it and who would have to find me. So that's obviously an

illustration of the low points which some women, not all, I'm not saying all, but some women get to and why we need to deal with this group of women better. Secondly, I want to be treated as an intelligent, informed woman and not to be lectured. I understand that no choice is without risk, but there should still be choice. I was very grateful to the NHS for my breast cancer treatment, choices were then limited to the preferences of my care team with limited opportunity for discussion. And that's where the whole thing about shared decision making and respecting our patient's choices and listening and helping them make decisions is crucial. And thirdly, and I guess it was the summary of my survey really was there is a missing link in the NHS between finishing breast

cancer treatment and starting to get your life back. And that's, I think, where we really want to try and plug a big gap with more of the work that the Neuson Health Menopause Society breast cancer group is doing. Absolutely. Thank you ever so much yet again. And we'll put some resources in the podcast notes and on the balance website, we've got a booklet that we've all written together for women who've had breast cancer. So I'm very grateful again for your work and your time for the podcast and I wonder how long it'll be and you come back for number six. So thanks very much, Sarah. Thank you, Louise. For more information about the perimenopause and menopause, please visit my website, balance hyphen menopause.com,

or you can download the free balance app, which is available to download from the App Store or from Google Play.