Rebecca: I think what’s also important is side effects can interact with each other. So hot flushes can cause sleep disturbance, cause increased anxiety, which can affect their mental health. 

Rebecca: So hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for Gateway C. We both passionate about diagnosing cancer early, and in this podcast we want to share our clinical experiences with you so you can make better, faster and more confident cancer diagnoses in primary care. 

So, there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymised with no identifiable patient data.  

Gateway C is the free early cancer diagnosis resource funded by the NHS and is based at the Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more. 

So today we’ve got a slightly shorter bite-size special episode talking about the menopausal side effects of breast cancer treatment. Joining us today is Dr. Liz O’Riordan. She’s a former breast surgeon. She’s had breast cancer herself three times, and she campaigns to raise awareness and support around breast cancer. And this, I’m told, is her mastermind topic! 

Sarah: We’re not gonna ask any horrible questions though, Liz. 

Rebecca: Is this your only, is this your only mastermind topic? 

Liz: I have quite a few – sex, and death, and open water swimming, and yeah, all sorts. 

Rebecca: All sorts. Okay. What’s yours, Sarah? 

Sarah: Oh, well it’ll have to be FIT if I’m here! Yeah… 

Rebecca: Yeah, we call her Doctor FIT! There we go. So, we are gonna crack on and Sarah, doing okay? 

Sarah: Yeah. Good. Thank you. 

Rebecca: We’ve had a, a good morning so far… 

Sarah: Mm-Hmm.  

Rebecca: … and Liz is joining us remotely. Remind us where, where you are, Liz… 

Liz: I’m in the middle of Suffolk 

Rebecca: Okay. Sun’s still shining? 

Liz: Sun still shining, yes! Blossoms in the trees, all looking happy outside. 

Rebecca: Oh, I love cherry blossom. So, tell us a bit why you enjoy talking about this subject. Why is it important? 

Liz: As a breast surgeon, I would tell women that I was putting on endocrine therapy, they’ll get a few months of hot flushes and a bit of vaginal dryness, and that’s it. 

Rebecca: But… 

Liz: Then I had all that treatment myself and I realised, oh my God, I’ve been thrown into an instant menopause aged 40. My vagina is lined with sandpaper. I can’t sleep because of hot flushes. I need help.  

Sarah: And how long are you… Sorry… How long are these women being asked to stay on this treatment for? 

Liz: So we’re on this treatment for five or 10 years, and it was only the lovely Richard Simcock who tweeted me and said, Liz, did you know there’s a load of drugs you can take? And I said, no. Why am I’m only finding this out now? And I realised most surgeons have no idea how to treat it. GPs have difficulty enough dealing with a normal menopause, and there are thousands of desperate women who are struggling to cope. 

Sarah: And does it affect compliance with the drugs? 

Liz: Yes, I’ve wanted to flush my own drugs down the toilet, and we know anecdotally, over a half of women don’t take their tamoxifen or anastrozole regularly because it makes them feel so bad. 

Sarah: And that’s for five or 10 years. 

Liz: Yeah. 

Rebecca: So just going back a bit, why do, why do women get these symptoms? What, what’s the kind of biology and um, of pathophysiology behind it? 

Liz: Yeah… 

Rebecca: Big word! 

Liz: … Great question. So if you’re having chemotherapy and you are premenopausal, it will stop your ovaries working so you have a sudden drop in oestrogen levels that makes you feel menopausal. If you are… have… if you’re postmenopausal or you are being given aromatase inhibitors and having a ovaries switched off with Zoladex, that puts you into an instant menopause. But the drugs, like the aromatase inhibitors, reduce your levels of oestrogen from a menopausal woman to 95% less. So you have much less oestrogen than a normal woman going through the menopause. And it’s instant. It happens in a couple of weeks instead of two or three years, and it is permanent as long as you are on that treatment. 

Rebecca: Can you talk about a few of the symptoms or many of the symptoms that women may… 

Liz: Yeah. 

Rebecca: … present with. 

Liz: I think the first group is the vasomotor symptoms, the hot flushes, the night sweats. You know, spooning is a thing of the past, separate duvets, dripping, stripping off all the while. If you’re a woman in that, you’re going through them, you’ll recognise them, but it’s really, really hard. And the first thing to say is there are lots of things you can do, such as lifestyle measures, regular exercise, eating healthily, sleep hygiene, cutting down on alcohol, even CBT, acupuncture, hypnotherapy can all help reduce these symptoms and we don’t talk about that enough. There are also now a long list of drugs, which the British Menopause Society have on a great leaflet that you can use to treat those vasomotor symptoms. But the thing is, they are antidepressants and anti-epileptic medicines, and women think they’re being given them because you think they’re mad, not because it’s an antidepressant that has a different way of working. So it’s really important to say. And I met an oncologist the other day who said, whilst he was asking women about their symptoms, he’d say, how’s your mood? How’s your sleeping? How’s your pain? So if you’ve got pain, I can maybe give you amitriptyline or pregabalin that will do both functions and explain. So there are a lot of drugs that you can have for it. Other symptoms that are really hard to talk about are the genitourinary symptoms, and you must get lots of women coming to complain about vaginal dryness and loss of libido. 

Rebecca: I remember, I was going to ask you just about that, Liz, because I want to hear more you. You tweeted something about topical oestrogen. 

Liz: Yes. 

Rebecca: Because having gone through it, you said it was very different. You would tell as a breast… with your breast surgeon hat on, you would actually say, no, you can’t. But as somebody who’s gone through this, you actually swear by topical oestrogen and you, and you gave a very nice comparison, are you able just to talk about that? 

Liz: Yes, I can. So we’re talking about here, topical oestrogen that you put inside the vagina, not HRT. Now as a breast surgeon, I was terrified of my patients getting a recurrence and I said, no, no, no, no, no. Then I ended up with a vagina that was lined with sandpaper. I was getting labial skin tears after an hour on the bike, and I’m used to riding for four or five hours, the cystitis, the painful sex. And my oncologist is brilliant. And she said, nope, you can have Vagifem. And I’ve now had my second oestrogen positive recurrence. And she said, no, you can still have… I use Vagirux, actually, it’s better for the environment. There’s less plastic to dispose. And there are now studies that show, one published in the Journal of the American Medical Association looking at over 50,000 women in Scotland and Wales, vaginal oestrogen does not increase the risk of recurrence. It does not increase the risk of mortality, even if you are on an aromatase inhibitor. The amount absorbed vaginally is tiny and it goes back to normal after 10 days, but there are still surgeons and oncologists and GPs scared. But I put it to you, when we know that exercise can reduce the risk of recurrence by 30% and cutting down your alcohol to less than seven units a week can reduce the risk of recurrence and eating a healthier diet and losing weight can reduce the risk of recurrence, and I can go and buy cigarettes that can cause lung cancer. If you’re not telling me to do any of that, you’ve got no right to say that I can’t have vaginal oestrogen because it’s my quality of life. And I think it should be informed consent. And the patient should say, yeah, I get you’re worried, but I know it’s safe. I want it. Please, can I have it? Plus, the dose of vaginal oestrogen is now 10 micrograms, and all the studies were done in the olden days when it was 25 micrograms. So please just bloody prescribe it. Sorry, we’re not allowed to swear. Please just prescribe it! 

Rebecca: Bloody is fine! 

Liz: And I wish, I wish when a woman was started on endocrine therapy, she was told – this will affect your intimate sex life. You should be using vaginal lubricant like Yes and Sutil, and you may need vaginal oestrogen and you can prescribe it. Rant over. 

Rebecca: No, I love that rant! 

Sarah: Yep, that’s…  

Rebecca: I think patients may feel that they shouldn’t complain about things like this because they’ve got bigger fish to fry. They’ve got a cancer diagnosis. Why should they talk about their sex life? But actually, this is quality of life here. 

Liz: It’s a basic human right, and it’s hard to talk about. It’s hard to talk about with your partner, let alone your GP or your breast surgeon when you’ve waited five hours to see them in a busy clinic. And what I want is every, every healthcare professional to ask people with breast cancer to say, look, how is your sex life? We know it can be affected. It is normal for it to be affected, so you don’t feel like you are the idiot bringing it up. And for GPs and surgeons and oncologists and gynaecologists to say, if you need it, you can have it. It’s not a problem. It’s completely safe. But this is vaginal oestrogen not systemic. HRT. 

Sarah: We love a solution as well. You know, this is it. 

Rebecca: Love a solution. This is the thing about this podcast is not only the problems, we want a solution. Talking about another solution. Can you just talk while we’re on that, that neck of the woods?… 

Liz: Yes. 

Rebecca: … To talk about vaginal moisturisers. What’s good, bad… What’s good, bad, and ugly? 

Liz: So the first thing to say is you don’t need to wash your vagina with anything special. Just normal soap and water is fine. Vaginal moisturisers can be really helpful, but you need a brand that doesn’t have a load of chemicals or glycerin or preservatives in. And I love the brand by Yes, yes, yes, who make lubricants and vaginal moisturisers like a insert that you can pop in and they’re great, they can come rushing out at a bad moment so you might need a little panty liner sometimes, but they are great. But you want to use a safe, non-medicated brand ’cause you can get stinging and irritation, especially if you have got vaginal soreness inside. 

Rebecca: Okay. Just going back to the, the symptoms. I stopped you… 

Liz: Yeah. 

Rebecca: Would you like to continue? So you’ve talked about the kind of vasomotor, you’ve talked about the GU, vaginal symptoms. What other symptoms that patients may have? 

Liz: Yeah. So we’ve got the brain fog. Where you feel like you’ve become the, the seven witches of the menopause and you can’t think clearly and everything takes longer, and that’s really hard to deal with. And you can also have that doubled if you’ve had chemotherapy, because chemo does cause brain damage. And I still can’t see anagrams, encrypted crosswords, anymore. There’s no easy answer. I think again, trying to have healthy sleep hygiene and exercise can just help your brain think a little bit better. Telling people at work that you need more time to do things. Sometimes doing crosswords and word puzzles can help, but I think it’s realising – This is happening. It is a normal part of the menopause. It’s not gonna change. Accepting it can be a really big way of then moving forward and just learning. You write lists, you have a different way of running your life. Another big thing is the bone pain, the joint pain, the aches and pains that you get, and you can get it on Tamoxifen. And the problem is oestrogen is a natural lubricant. So without it, your bones and joints get sore. And I used to say it’s just the hands and the feet, but it’s not. And if you do a lot of exercise, it can take you months and months to recover from a normal injury. So again, exercising will actually help keep the bones loose, keep the joints supple. So even if you’re sore, you don’t wanna spend five months in bed ’cause it will make it worse. A healthy diet can help, making sure you’re getting a lot of the Omega-3 oils, and some people will need to take things like the glucosamine and chondroitin supplements to help with arthritic type pains. Trying to reduce your weight can help, and that does happen after the menopause ’cause your metabolism slows down. I know it’s really, really, really hard to talk about, but again, general lifestyle measures will help with the aches and pains. If people are struggling, you can ask their oncologist to swap them. So I got really bad carpal tunnel syndrome on Letrozole and I move to anastrozole… Symptoms went. And actually trying different brands of drugs, and I dunno how this works, but especially with tamoxifen, you may find one brand works very differently for a patient and you may have to prescribe the pharmacist to prescribe that one particular brand because it really helps your patient side effects. 

Rebecca: The other thing, tamoxifen is more likely to cause the joint and muscle aches rather than the other drugs. Is that correct? 

Liz: Well, no it’s not. So with tamoxifen, you stop the breast absorbing oestrogen, but you still produce it with your aromatase enzyme in the fat. So, although you can get aches and pains, whereas the aromatase inhibitors stop you producing any, and they are more likely to cause osteoporosis and osteopenia, which is why I trust you guys to do the DEXA scans and monitor calcium and vitamin D supplements as well. 

Rebecca: With patients who don’t experience any symptoms, they may start to think, oh gosh, are these drugs actually working? How can we, and I looked at it a bit like with pregnancies, some women, and with menopause, they fly through. They don’t have any morning sickness They don’t have any hot flushes. Is this the same, that it doesn’t mean that if they’re not experiencing anything, that the drugs are still working? 

Liz: Yeah, it’s exactly the same. It’s like, again, with the menopause, some women have a load of symptoms, some women don’t, and some women may not have any breast cancer cells there to treat. They are working. Just not everyone gets the same amount of side effects, and they generally do get better within the first couple of years. But women need help to get through those first couple of years. 

Sarah: And we’ve talked about, I think this is the most difficult part of this really is we’ve talked about using vaginal oestrogen and that being okay. What’s your view on using HRT in these women? 

Liz: Great question and a very thorny subject. So, me and all the international societies, the British Menopause Society, rural College of Obstetricians and Gynecologists, America, Australia, we all say that HRT should be a last resort for anyone with breast cancer. There are a couple of trials that show it increases the risk of recurrence, and if you get a recurrence, you’re going to die from it. And it doesn’t make sense to me to give a woman with an oestrogen driven cancer, extra oestrogen and progesterone. It just doesn’t make sense. However, we know that some women can have really, really severe side effects, especially psychologically and mentally, and I think it comes down to informed consent. If a woman has been told, these are all the different things that you can use to treat the menopause, and you’ve gone through lifestyle factors and all the other drugs that can help, and they are still really, really, really struggling, you first ask their oncologist if they can reduce the dose. Or have a treatment break or maybe switch to tamoxifen and if they still want to try it and it’s informed consent and they can accept the risk that it might make their cancer come back and deal with any issues following from that, I don’t mind if they have it at a low dose. Again, I’m not the person to say no, but I think it’s that informed consent of being really aware it can increase the risk of recurrence and it should be a last resort ’cause I’ve seen the women who’ve taken it and it does come back and then they think, why me? It’s really, really hard. I know there are different schools of thought out there saying, HRT is safe. And I disagree. We have the studies to show, but I don’t want to withhold it from anybody ’cause these drugs are really, really hard. Does that make sense? 

Sarah: Yeah, absolutely. And, and am I right in thinking that actually if you’ve had, even if you have had a triple negative initial primary, the recurrence might have a different receptor status. 

Liz: That’s right. I’ve seen a lot of triple negative cancers come back with oestrogen sensitive receptors. So if you give someone with triple negative disease HRT, they may be driving those cancer mutation cells to come back. So I think, it has to be a last resort, but that means you need to know what all the other options are to help women come through. And that is really, really important because not everyone is aware of how to treat the symptoms of the menopause. 

Sarah: Not be reassuring somebody that just because they don’t have an oestrogen receptor on their primary, that actually it’s, it’s safe. It still has to be a much more complicated conversation than that really. 

Liz: And I think there are a lot of women getting, a lot of patients like me getting terrified when they hear that HRT can stop you dying of dementia or Alzheimer’s disease or heart disease. There is no evidence to prove that. And you know, HRT is not licensed to treat anything apart from the symptoms of HRT. Social media is full of women who are coming to me terrified thinking, I’m gonna get Alzheimer’s, I’ve had breast cancer. It’s not… enough. It’s, you know, life’s hard enough. And there’s that kind of level of education of saying HRT is not the be all and end all. It doesn’t help a lot of women. It does have side effects. It can cause blood clots and things like that. And it’s, it’s you guys having the time, which you don’t have to have those important conversations. 

Rebecca: I think too many people put everything on HRT, not necessarily with the breast cancer community, but generally that we see a lot, particularly being, I suppose, lady GPs that, that a lot of women come to us and, and we do a lot of women’s health that think HRT or nothing, and they may have a very strong family history of breast cancer. So there’s lots of things, so if we can put HRT as last resort, and we’ve talked about almost, things that we can help locally. But can you give any practical advice to help with the vasomotor symptoms they may be experiencing?  

Liz: So I think it starts with the basics and lifestyle measures and say we know that if you eat a healthy plant-based diet and you are exercising regularly and you cut down alcohol and you have good,  good sleep hygiene, they’ll help with all the symptoms of the menopause as well as reducing your risk of recurrence. They’re giving you that sense of mindfulness and control. There are also things that can help, like acupuncture, hypnotherapy, CBT to help you learn to cope. And I’ve tried them all and they do work. So lots of things before you even go near drugs because when you’re taking drugs every day, you don’t want to add on a lot more. And I think telling women there are things we can do to help. Let’s start simple and build up so the woman knows – my symptoms are being taken seriously. There’s somewhere I can go if they don’t work. And starting small with the tablet and seeing if it can help. But I think knowing there’s help available, it should get better, that can really help a woman learn to cope with it. 

Rebecca: I think you also mentioned, off air about simple things like cotton T-shirts and wearing layers… 

Liz: Oh, yes. All those things. 

Rebecca: Yes. All those things. No, please do tell us. 

Liz: All that kind of, sorry, there’s so much to talk about! 

Rebecca: No, no, no. I know. I do think this just really helpful just ’cause sometimes we’re a bit, we’re a bit lost in primary care, that people are desperate. We can’t give them what they want and then it’s almost just some, some practical advice is really helpful. 

Liz: Yeah, sure. So for the, for the hot flushes in the day, wearing layers that you can take off and not be stripping off your bra like Fleabag in a supermarket! 

Rebecca: Lovely, love Fleabag. Just rewatching it at the moment! 

Liz: I love Fleabag. I know. 

Rebecca: Have you, have you seen it Sarah? 

Sarah: I don’t think I have. 

Rebecca: Right. Yes, you have to watch it on BBC. They talk. Is it the third wall? Is that what it’s called? 

Liz: Yes, it is the fourth wall where she’s talking to us. But yes, we could do a whole episode on Fleabag! 

Rebecca: Sorry! 

Liz: … Having, I have a little battery-operated fan and a hand fan in my handbag to cool me down. I use mineral powder foundation, so I don’t sweat through it. Those practical things can help. For the hot flushes and night sweats, so I sleep naked because I don’t like feeling sticky, but a lot of women will wear running tops that are meant to wick the sweat away so you dry really, really quickly. Separate duvets is a complete game changer. I can have a really lightweight summer one. My husband can have a thick winter woolly one. He’s not getting upset when I’m corkscrewing and throwing the duvet on the floor. There are things called Chillows. Chill pillows that are always cool. So when you’re having hot flush, you just put this on your pillow and it’s really icy cold for your head that can help. Avoiding alcohol and spicy food, they are often triggers for the hot flushes and night sweats. So if you, I will have a curry and a glass of champagne. I know I’m gonna regret it the next day because my sleep will be bad. But these are really simple, practical things that can help. 

Sarah: Perfect. Thanks. We have lots to do then. 

Rebecca: Yes, lots to do and most to help, and I like we like that. 

Sarah: Yes. Yeah. 

Rebecca: We like coming away with some practical points. Right. I, we could just carry on talking about this, but we’re gonna now go onto the key clinical points. Okay. So, patients need to be involved and to have informed consent when they’re agreeing to new treatments. We need to balance risk of recurrence and benefit quality of life. And the big one is HRT – last resort, but they need to have informed consent. This needs to be managed not only in primary care, but secondary and tertiary care. 

Sarah: Yeah, and that and that, like lots of things, every woman’s experience will be different and their symptoms will be different, and we need to listen and react to different symptoms. And then the last one, which is, which is great really is that lifestyle changes are free and very effective. So as we’ve said before, exercise, exercise and exercise, which is great! 

Rebecca: And I think the final thing, which is not on our crib sheet, but I’ve learned from Liz today, you know, ask about the more difficult things. Ask how is it affecting their sex life. Ask about intimacy, all these things, which actually patients may think is not important to tell the GP ’cause actually they’ve got bigger things to, to work through. But I think it’s really important, um, to ask these things as well, which is important to them. 

Sarah: And don’t be afraid to use vaginal oestrogen. 

Rebecca: There we go. That’s a huge one. Liz, was there anything else? 

Liz: Can I plug my book, which has got all this in there? Is that allowed? 

Rebecca/ Sarah: Yes! 

Rebecca: Yes, please do. And also your podcast, which is fascinating. 

Liz: Yeah. No, thank you. So I say if you, if you want another resource to be able to share with patients or just have in your office, then my book, The Complete Guide to Breast Cancer, covers everything from sex, diet, menopause, exercise, symptoms of recurrence, and my podcast – ‘So now I’ve got breast cancer’ is where I answer patients questions with experts talking about hair loss and chemotherapy and body image and the menopause. So they’re great sources, resources you can digitally signpost your patients to. 

Sarah: Lovely.  

Rebecca: Fantastic. Thank you very much. So that’s it for today and thank you to Sarah and to Liz. I’ve thoroughly enjoyed this morning and thank you for listening to this podcast from GatewayC. We hope you’re enjoying this series. Please do support this podcast by leaving us a review or rating wherever you get your podcasts. And if you’ve got any topic suggestions for future episodes, we’d love to hear them. Please do include these in your review. If you’ve found this or other episodes interesting and helpful to your practise, please do share it with a friend or colleague. It really does help to spread the word. We’ve got a free Cancer Conversation on the side effects of endocrine treatment available on the GatewayC website. All reference studies and guidelines are in our show notes. Thank you again for listening and thank you to our producers, Jo Newsholme from Rethink Audio and Louise Harbord from GatewayC. See you again soon.