The Dr Louise Newson Podcast - 234 - Breast cancer treatment and HRT

Episode Date: December 12, 2023

Content advisory: this podcast contains themes of mental health and suicide. Dr Louise is joined by her patient Trudie Jennings in this episode to talk about the complexities around HRT during and after treatment for breast cancer. Trudie describes how she started HRT to successfully manage crippling anxiety and other menopause symptoms and a few months later she was diagnosed with an aggressive breast cancer. NICE guidance states women should stop taking systemic HRT if they are diagnosed with breast cancer. However, after careful discussion with her cancer doctor and nurse, Trudie decided to continue with HRT during her treatment as, for her, the menopause symptoms were more challenging than her cancer treatment. Trudie and Dr Louise discuss shared decision making and informed consent, and how important it is for women with and after breast cancer to be fully informed about potential risks, benefits and uncertainties about HRT following a breast cancer diagnosis so they can make the best decision that is right for them. Trudie’s three tips for women who have had breast cancer and are struggling with their menopause:  Know that as a patient you do have choices about whether to start or continue HRT after breast cancer treatment. Speak to your doctors and nurses and be informed so that you can make the right, personalised, decision for yourself. Trudie has found her healthcare professionals in cancer care open and helpful when discussing her need for HRT. You know your own body best, so listen to your body to get the treatment that will be best support you. Contact the Samaritans for 24-hour, confidential support by calling 116 123 or email [e-mail] Click here to find out more about Newson Health

Hello, I'm Dr Louise Newsom. I'm a GP and menopause specialist and I'm also the founder of the Newsom Health Menopause and Wellbeing Centre here in Stratford-Pon-Avon. I'm also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research,

bust myths on menopause symptoms and treatments, and often share moving and, and always inspirational personal stories. This podcast is brought to you by the Newsome Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So today on the podcast, I've got someone with me called Trudy, who's very kindly agreed to share her story.

So I first met Trudy about five years ago, and she came to the clinic as a patient and travelled many miles actually to come and see me. me. So welcome Trudy. Thanks for joining me today. Thank you. So when you first came, it was a few years ago now, about five years ago and people weren't really talking about the menopause as they do now. And I don't know quite how, I hopefully will explain how you found me, but then you came all the way, many miles from the north to the clinic. So do you mind explaining what happened and when you discovered that you might be experiencing some symptoms? It was around 2017. I was 49. And that

year I started to feel anxiety for no apparent reason. I was happy. I was healthy. I was enjoying life. Married, no children, but a great life really. And this, it was more irritating than anything else, this anxiety, because there didn't seem to be thoughts associated with it. It just felt like a bodily sensation. Anyway, so I was kind of just trying to cope with that and ignore it. But then in December, I came down with a tummy bug and I didn't get better and I couldn't get out of bed. And after about three weeks of consistent nausea, I was really starting to get worried and was going to the GP, certainly calling them two or three times a week and going at least twice a week. And my GP was saying that there was just nothing that they could find that was wrong with me.

My bloods weren't showing anything. And then eventually they suggested I go for a brain scan. And at that point, I just knew that wasn't the way forward personally. I knew there was something else going on. And then I had a friend. my friend Sarah, saying that my symptoms were so like morning sickness that she'd had with her youngest daughter, that the parallels were just, she said that you're describing exactly the same thing. And she said she remembered her doctor telling her to get out of bed and pull herself together,

but she said she was absolutely flawed by it, which led us to start thinking about hormones, which sounds a bit daft now, but it just hadn't been on our radar at all. I arranged privately to go for an endoscopy and colonoscopy just to make sure that there was nothing. going on and after that I got the all clear the consultant said that off the record he wondered whether it was menopause because he said his wife's friends were coming down with so many strange symptoms with the menopause and he said it just seems like it's a lot more than people realize so that was really helpful I went back to my GP who said that night sweats and hot flushes were the only symptoms that she felt were appropriate and because I didn't have them that she

didn't think it was the menopause I started to worry about it. about my coil that I just had fitted a few months previously, thinking, oh gosh, is it to do with that and hormones, and I had that removed. And immediately I plunged into anxiety that was beyond belief. I was internal shaking, agitated, just absolutely dreadful. We started scouting around, and I found a doctor in a town not very close by, but close enough to go on a day trip to, and he took my bloods and found that I had no pedestrian estrogen or testosterone. And he had sort of, I don't know, some sort of private pharmacist prepare hormones for people. And he sent me a sample through the post.

And unfortunately it did nothing at all. I had to put a little bit on the top of my arm, but it didn't do anything at all. But at least I knew that hormones looked like it was a possibility. I actually came to you after that. I think, well, I saw your name was starting to appear on things like the websites where women with symptoms similar to me were talking about how are we going to get some help for this. And I arranged an appointment with you and we drove down to, it was Birmingham then. And we had an appointment and you said straight away,

this is not anything other than what I would see as the menopause. And I think I can help you. By that time I was taking antidepressants because I had my anxiety. I say anxiety. There's almost a different book of symptoms for the menopause, if you ask me, because the anxiety, it was so physical. It was this internal agitation that wasn't related to anything. It wasn't related to thoughts.

It was just this constant, almost biological, awful feeling. Anyway, you prescribe patches and testosterone and progesterone, and by June, saw you in the April of 2000. 2018 by due to 2018. My husband and I went on holiday to Croatia and had a smashing time. In fact, we just, you know, it was just unbelievable. The transition, the transformation. My appetite was back. I was happy. It was just great. And we came back for a review with you in the August of 2018. And yes, I don't know if you want me to continue then what happened? Yes. Because that's kind of a second chapter. So the second chapter then was that I told you that I'd had an inverted. Yeah, yeah, part two, that I'd had an inverted. nipple and you asked to have a look at it and I think we both realized that it probably was quite serious and you then looked to my GP and asked for an immediate referral and I think it was the Thursday the following week I was in hospital diagnosed with breast cancer and I was on a fast track then yeah because I very distinctly remember that consultation because I'd obviously asked

if you wanted me to examine you because you said you'd found a lump and lots of people have lumps and most lamps are not cancer. And I examined you and I thought clinically this is a cancer, but you don't know until you have a proper histological diagnosis. And we both looked at each other, didn't we? I remember very, very clearly, and saying, I can't tell you for sure, but it doesn't, we need to get it checked out. And then the next question was, you said to me was,

do I need to stop taking my HRT? And you'd only just started to feel so much better. And I remember we've looked at each other, And I said, well, we don't know it's cancer yet. Shall we wait until you've got a diagnosis? And you said, yes, I think I'm happy to do that. And it's an individual choice. Some women will stop straight away and some women.

But you decided, didn't you, that we're going to. And I remember you contacted me because your appointment came through quickly. And then you got the actual proper diagnosis, didn't you? I did. It was an aggressive cancer. It was seven centimeters long, actually, by then. And, yeah. They were clearly expecting me, the oncology team,

were clearly expecting me to come straight off the HRT, but were really understanding when I said that actually, when I told them my story and said, I don't think I can get through this if I'm not on HRT. And I gave them lots of articles and some of the articles that you'd advise me to have a look at. And they were absolutely fine with it totally supportive, yeah. Which is amazing, because I actually remember,

I've got quite a good memory and I often remember locations of when I'm doing something or speaking to someone. And I think it was at a weekend when I got through to you because my daughter was playing in a concert at Birmingham Conservatoire. She's a trombonist. And I really wanted to speak. I think you might have emailed me to say that I've been diagnosed. And so I remember phoning you up and I was trying to find a quiet place that was discreet in this concert hall before my daughter because I dropped her off earlier so she could have a rehearsal beforehand. And I remember talking to you about what about your HRT? And they've given you, didn't you have chemotherapy first before the surgery?

I did. I did. I had quite a big bout of chemotherapy, which shrunk the tumourine goodness. What it's usually called is neoadjuvant chemotherapy. So it just means neo means we're sort of new before. So some people have the breast surgery and then they have chemotherapy. But because yours was, and please correct me if I'm wrong, but my recollection was because it was quite aggressive and a big cancer, what they want to do is shrink it before the surgery. Is that right? So you have heavy-duty drugs, basically, chemotherapy. And your oncologist had decided that it was such strong chemotherapy that actually whether you take HRT or not is not really going to make a difference to your overall prognosis and, you know, the outcome from your cancer.

And I actually, I mean, obviously, as a few years ago now, more and more people who've having treatment for breast cancer or have had breast cancer asking a question about hormonal treatment, but I thought actually how wonderful that you've had, it's felt like a very open conversation with some very wonderful doctors who could think in a reasonable way, because it's a very knee-jerk, easy reaction to just say stop your HRT, and obviously that happens a lot for a lot of women.

And obviously, without HRT, there would be no risk for your breast cancer, but actually for your mental and physical health which you needed to be really strong to cope with the treatment, that's where you were coming from, wasn't it? It was. It was just no... My husband said you can't, you can't not have it. You know, it's just a no-brainer, really.

So yeah, and I do think I got through it because of the achy. I was still on the antidepressant. And I have to say, although it was pretty horrendous, the whole thing and had a mastectomy than had had radiotherapy, it was a walk in the park compared to the menopause stuff. Really?

Genuinely. Genuinely. I remember saying that at the end, I would, you know, it's no comparison. I was so poorly with the menopause and the cancer. Yeah, I was, you know, I was, but my head was okay. That's quite something, isn't it? Because, and I'm not here to be little breast cancer at all.

And for everybody, it's different. Experiences in the treatment's different. But it's quite simplistic medicine to suggest. that the menopause is something that doesn't affect women as much as breast cancer treatment does and especially to have chemotherapy as well, which cancels and it did cause side effects, isn't it, to you? Yeah. Yeah, yes, I had sepsis at one point and, you know, I lost all my hair and all of that sort of thing. But really, I felt okay. I knew it was something I had to get through. I had lots of support. I didn't have internal tremors. I didn't have

blackness. I didn't have any of that. I was just back to kind of normal self coping with something that was awful. And then after your chemotherapy, you had a mastectomy. I did. Did you have other treatment after that? Yes, I had radiotherapy after that. Yes. And then after that, did you have any other drug treatment or do they offer anything else?

Or what was the plan after that? Yes, I'm on tomoxophan for 10 years. Right. Okay. And have you stayed on your HRT with tomoxophan? I have. I decided to stay on it. My levels, I had my bloods done.

pretty shortly after my radio therapy. And they were very low. I had 200 milligrams of patches. And I was only getting 84 on my reading. And I recently probably shouldn't have, but I got up to three just out of interest to see whether I would feel dramatically different. I had my blood's done with my GP

and they've only gone up to 97 with three patches. So I'm not a great absorber. That has to be said. So she's very interesting, isn't it? Because there's a big debate, as you probably know, over the last few months about the maximum dose, what we should be prescribing. And it's more about the amount that we absorb rather than the amount we prescribe, and we've been looking at all our data, and we show like you,

there are some people that have higher doses prescribed, but they have less in their blood compared to others. And some have lower doses and they have higher absorption. And it's so interesting because our skin is really different as well. So your blood level of estrogen is actually still quite low, isn't it? It is. It is. And when I use the testosterone, all it happens is that I grow hairs. That's all it happens. So if I put it on my leg, I just get a big hairy leg. So it suggests it's not absorbing terribly well that. No, but you still use the testosterone. No, I don't because it was just creating hairs. And when I had that tested, it was just insignificant the amount that I had. So obviously you weren't absorbing that either, which is very interesting. Some people don't. And this is where, and this is where,

HRT is very individualised. You know, the guidelines are very clear that it should be individualised. And we are all different. And also what works at one stage doesn't always work at another stage as well. So, you know, constantly we look at choices of preparation. Sometimes we'll change from a patch to a gel or a different type of patch or a different type of gel. Or with the testosterone, we might try a different type of testosterone. And we are also different. And there's no right or right. And tamoxifen, for those of the listening, is interesting because it's something called a serum, which is a selective estrogen receptor modulator.

So it can be anti-eastrogen on the breast tissue, but it can actually be pro-estrogen in other areas, including the lining of the womb, actually. And so we know also that some women who take tamoxifen actually have a higher level of estrogen in the bloodstream as well, even if they're not on HRT. So we don't really understand, and it's not as simplistic as estrogen is the devil when it comes to breast cancer. And also, I spoke to someone the other day actually who'd been on HRT for six weeks, developed breast cancer, and she said the HRT must have caused it. I should never have taken it. And we still don't know whether HRT is associated.

It might be if there was a cancer there already when someone was taking HRT, it might grow a bit quicker. but we also know from evidence that women who were on HRT at the time of diagnosis of their breast cancer have a better outcome. And is it because those women, it presents quicker and earlier because it's growing quicker, so you're more likely to feel it, or is it that the estrogen is anti-inflammatory and helps, you know, reduce some of the inflammation in the cancer and improves outcome? And we don't know the answer. So it's very interesting, but I think also, It's about, you know, I know, because I've spoken to you before, you don't regret taking HRT even though you've had breast cancer, do you?

Not at all. Not at all. And I don't associate them. I mean, I was quite, I used to drink socially an awful lot. And I would say, if I want to try and pin it on anything, I would put it onto my overconsumption of alcohol. You know, I've read statistics. Why would I think it was the HRT that I'd taken for a few weeks as opposed to the drinking

that I'd done for the past 20 years, you know? So, yeah. And for a lot of women, it's bad luck, actually, about one in seven women, as you know, develop breast cancer. And it's the same as other types of cancer. Sometimes we just don't know. And often it can be numerous things. It might be partly related to drinking. It might be partly related to your genetics.

It might be partly related to something else that we don't even know. And I think that's really important because you can always blame yourself sometimes when you've had a diagnosis of something. and that's just the worst thing to do because you are a really positive person, that's for sure. And looking also at your future health because you're a really healthy person, aren't you, and you want to keep healthy? I am, yes. Yeah, and that's the idea now. Yeah, and we do speak to a lot of women who come to the clinic who've had breast cancer

and they actually say, I'm more worried about osteoporosis or heart disease or actually my day-to-day well-being than I am. about having breast cancer. And I've heard, and you're not the first person who said, I would prefer to go through all that treatment again if it meant I would feel better from taking HRT. And then there's a whole moral question for me as a doctor. How can I refuse a treatment where as a woman who knows what it's like firsthand to have had treatment for breast cancer says to me, I would prefer to do that again than continue as I am now? Absolutely. And I talked to my cancer nurse, the Macmillan nurse specialist, who was absolutely amazing. And I said, what's happening? So to continue the story then, though, I felt so well after my recovery from cancer, I came off the antidepressants. And my husband, honestly, he just went through the roof when I told him that I decided to take my patches off. And I just took off. I just thought I feel great. Yeah. And I literally fell through the floor. And I was fine after I took him.

came off the antidepressants. That was in the August, I think. And then in the December, I decided to take my patches off. And within three weeks, I was desperate. It was awful. Appetite, lost anxiety. And there's something about, it's so hard to believe that it can be all about hormones. And I jumped straight back on to the antidepressant.

And again with my husband saying, please don't, please don't. This has been hormonal from the start. Please just. and me saying, I can't, I can't, I'm just so frightened, I can't go back there, I can't go back to feeling like that. And I had a terrible reaction to the antidepressant. It was the same one as I'd been on previously, but I just had an absolutely terrible reaction. So then the GP prescribed me another one equally bad. I was going down and down and then another one.

I'd gone back on the patches by this time, but I was suicidal by then. I felt so unwell. And I wasn't, again, it's kind of a different, feeling of suicide, I imagine to, I don't know, but it felt like I feel so unwell. There's just no point. I've had a great life. There's just no point in feeling like this. And I could have just said, thank you very much everyone. I've had a lovely time, but that's it. You know, I can't live like this. And another friend who is a psychologist said to me, Trudy, we can't help you at all if you're dead, but you know we can help you if you stay alive. And I just thought that was just a really,

helpful way of putting it. And we ended up finding a private psychiatrist again, which took so much, honestly, there was just no availability sort of locally within the health service. And she was amazing. And she wasn't interested in the menopause. She said, I'm just going to sort your brain out because you've overdosed yourself on so many different things here. And she did. And yeah, I'm still on the antidepressant. My husband is still adamant that all of this could have been avoided if I just stayed on my HRT. But I'm... I'm in a really good place, and I would say the past two years, I've probably been the best two years of my life.

Amazing. So you're going to stay on your HRT, are you? I am, yes. Yeah, definitely. I would, you know, if there is part of me, just things, couldn't we just get up a little bit, but I think nothing's broken at the moment. So, and that would be one of the takeaways, I would say, to anybody,

take, you know, get what you need, take what you need to get yourself back, because, yeah, it's just so dreadful not being yourself. Yeah, and it's a really important point as well because HRT is not necessarily something that people have to take forever. They don't have to make the decision when they start, how long they're going to take it for. We know the guidelines are clear. You can take it as long as the benefits that way the risk, review every year, and for most women that is forever. But when women have, they're taking it and they're unsure of the risks benefits as in for women who have breast cancer,

then it becomes a very individualized choice. but also I always say to women it is reversible. You don't have to keep taking it. If you then have a wobble or decide you want to see what you're like without it, of course you stop it. And as you found firsthand, that it doesn't build up in the system. It doesn't last very long.

No, no, it didn't. It really only lasts the day that you use it. And it means then that women are in total control, which I feel very strongly as a woman myself, I want to be in control of my destiny. I want to be in control of my health. I want to be in control of my future as well. As much as I can, of course, there are so many things that just you can't be in control of.

With hormones, as long as women are taking hormones following breast cancer, knowing that there is uncertainty, knowing that there might be an increased risk, knowing that there are still benefits to your bones and hearts and brain and everything else, then that's where I feel very, very strongly, and I'm very happy to be challenged, that women can make the decision themselves. But if I was just sticking it on patches onto everybody that had breast cancer, that would be completely wrong. It's a very individualised choice. And also, I don't live your life, Judy. I would love to live your life, seeing the shame you before we started where you live and the beautiful view of the sea.

But I don't live your life. and I don't live with your husband. And for him as well, and it has a massive impact for him when you're not on hormones. And he's incredibly supportive. But it has to be a choice that you're comfortable with, more than anyone else,

but also the people that are with you as well. And I think your story just highlights that so clearly that there is no right or wrong in what we do. And we have guidelines as healthcare professionals. and we, in some of the nice guidelines, it says in extreme cases we can prescribe HRT for women who have breast cancer, I would argue that you were quite extreme because you were unwell. But also, we've got the shared decision-making guidance, that we are allowed to share the decision and even if we as healthcare professionals don't feel comfortable, but the patient does and understands

there might be risks of that treatment, then that's fine as well, and informed consent, really important that you are allowed to accept or refuse treatment, even if there are risks with that treatment or not having that treatment. And I think this is really important. You know, we're in 2023. We're not in the 1900s when women are locked away without any discussion because they're hysterical. We have to move forward and allow women to have their life

because you've relocated, you've having a sort of new life almost, but I'm not sure you would be doing that. if you weren't taking HRT, would you? I don't think I would. Absolutely not, and that's why I'm taking it. Yes, it's about very much about living in the moment. And I think that's one thing. All of this has taught us is just, when I say, I mean, my husband and me, and my mom,

just take each day and just enjoy it because none of us know what's around the corner. But if I can do anything to maintain my sanity and my physical well-being, I'll take it now. I will. That's so important. So I'm so grateful, Trudy, because I know it's not easy and I know it's taken me a while to persuade you to come onto the podcast to talk about very personal things. But I know that your words will really help people and maybe make people think in a slightly different way rather than a very binary black and white, yes and no way. Because medicine is an art form as well as a science and the art is getting it right for that individual patient.

and I strongly feel that. So I'm very grateful. So just before we end, I always ask for three take-home tips. Yes. So three tips for women who have had breast cancer, who are struggling with their symptoms, and maybe I're quite scared of HRT

or have been told they can't have it. What three things do you think would be good just to empower them to maybe think or get what is right for them? The cancer nurse specialist that I saw, I asked her, how are the women that you're dealing with that have come off HRT immediately? They've been diagnosed breast cancer. And she said, pretty dreadful. And she said, a lot of them come through it.

But a lot of them are housebound and very unwell for a couple of years. And that's a couple of years of life. So she was actually, I can't say delighted. She was very happy that I'd taken the decision to stay on the HRT. and it's just back to what you were saying Louise I think it's about quality of life you decide yourself if you can maybe you know battle it out

just give up a few more years and get through the whole blinking thing that's a choice of course mine was I just couldn't I just couldn't face it no chance so that would be the first thing is you know that there is a choice there as we've said and to talk to you health professionals

and you know I've generally found them really really good I went for my fifth final mammogram just a couple of weeks ago down here and because it was a move to the new area they wanted to see me the surgeon wanted to see me actually and he was just so brilliant he didn't bat an eye when I said about the HRT and yeah and we had a really interesting conversation about it and he said if you have any symptoms because your cancer was so aggressive you could come in here five times a week and say you want to be seen and you will be seen he said so we don't need to say we're discharging you and I just thought that's

so reassuring as well. Just to have that's a back up. Yeah, yeah, really sensible. And of course I won't because I, you know, hopefully, you know, I might have to go once or twice, but who knows. But I won't be hammering on his door. But just to know that I could and I'd be taken seriously was really, really good. It is very different, the menopause situation now.

And I just devour every piece of literature, everything on the TV, all your stuff, Louise, on menopause. And I honestly just think, oh, it's just... it's so good to hear because at least mostly women will think now that they're not going mad. And that's what I would say is you're absolutely not going mad. You know your own body. You know what you've been through. Even if you've had issues before, you know if it's different, if it's worse.

And yeah, you get out there and get the treatment and don't let anyone tell you that, you know, it's a bit, you've been a bit of a hypochondriac or whatever. You get it. You know your own body. And can I just say then? And my relationship with my mum has got so much better actually. And what came out was, and I asked her if I could say this, that when I was away at university, she was 51,

and she tried to take her own life. And she was hospitalized. And my family kept this from me. And she said it was the menopause, wasn't it? And I said, well, I don't know, but it sounds awfully like it was. And we've talked about it and talked about how unwell she felt and how no one would exactly the same symptoms as me. Just she knew when we were talking about,

she knew what I was talking about. And it makes, you know, and that's why she always says you would get through it, though. You will get through it, you know. You come out the other side and you feel great and all of this. But, yeah, that was really special too. And I'm sorry that she had to go through that. And I think now, hopefully she wouldn't have to go through that.

Really important, so important and really empowering. And I think that's the message that's we've through this whole podcast. actually is about choice, it's about being in control, being empowered, but also really being supported as well. And I think that's really important. So it's been wonderful. I've really enjoyed this podcast and I'm very, very grateful to you, Judy. So thank you again. Thank you, Louise. It was great. Thank you. You can find out more about Newsome Health Group by visiting www.newsonhealth.uk. and you can download the free Balance app on the App Store or Google Play.