The Dr Louise Newson Podcast - 271 - Endometrial cancer, the menopause and HRT

Episode Date: August 27, 2024

In this week’s episode Dr Louise is joined by one of her patients, Lesley Henry, a nurse who lives in Northern Ireland. Lesley shares her experience of menopause, which started before she received a diagnosis of endometrial cancer. Her treatment for cancer led to a surgical menopause, which she found debilitating. Lesley explains she feared her brain fog and fatigue would prevent her from returning to work and from caring for her mother. A firm believer in the importance of quality of life, Lesley decided to resume taking HRT. She hopes to help other women who are going through similar experiences and shares the things that have given her the strength to make decision about her treatment and her life: I have a faith. Not everybody will have the same faith as I have, and that's fine, but I think having a faith helps. Be proactive and find support groups. Through Action Cancer I learnt about scar therapy, which has helped, plus I completed a positive living programme to learn how to re-energise and rebuild my life. Be prepared to say goodbye to the old you. She's not coming back and in a way, she needs to go. Trust in yourself and listen to your heart. You are worthwhile and your life matters. 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 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 on my podcast today, I've actually got one of my patients who very kindly has agreed to share her story so other people can have a think and a listen about, well, shared decision-making,

making choices as an individual. So welcome Leslie to my podcast today. Hi, Louise. Thank you. So I met you a few months ago now and you've come from a sort of medical background, haven't you? Do you mind talking about your job and what you have been doing in the past? Yeah, so I'm a nurse. I trained as a nurse a long time ago in July 87 I started, which was years ago. And I was traditionally trained. And now district civil. sister and I have a caseload with another sister and it's sort of quite high pressured and lots of decisions to make about patients in their care and so I have a background and I worked on oncology before years ago and Beaver Park and Northern Ireland and that's where I'm from.

Yes. And yeah and I look after my mum, she's elderly, she's 92. Wow, okay. And nursing's changed over the years and And I started my medical training in 1988, so a long time ago as well. And having nurses who have huge amounts of experience is so important for any healthcare system. It really is. But, and I say but, because when I first met you, you weren't working, were you? You weren't able to work the way that you have done and are now. And you were having lots of symptoms that obviously led you to come

to speak to me. But do you mind talking about what has happened for your symptoms to occur and you're not to be able to work in the same way? Yeah, so I suppose I've had a long history of having heavy periods for years and years. And my mum had the same. So I went on 2021. I went on HRT at the recommendation of my friend because I was having dry ice, but mostly it was, I wasn't having hot flushes and I wasn't having night sweat I was having just other symptoms but long term I was looking into the future

and I thought I would have osteoporosis because I would have bone pain etc and also just resent my mum had colon cancer so I just wanted to sort of so my cousin actually told me that the benefits far out by the risk

so I took HRT patch before I ever met you before I knew you existed. And I then, because I had to go on the progester estrogen patch, so when I was in the estrogen, it was great. And when I went on the pedestrian patch, I had huge blood loss. I had cloths the size of my palm, of my hand, and my hemoglobin dropped from 12 to 8. So I came off the charity because I just couldn't sort of continue with it. And I went then and saw my GP

and she referred me for taste and I had a hystereoscopy in December of that year and in January the biopsy came back clear and then they wanted to put a coil in but I

I've never been sexually active okay because I have a faith and I don't believe I should live in son etc etc and I've never met anybody that I'd want to spend the rest of my life with but I've been Tuesday but that's fair yeah so I went to see a herbalist

because I didn't want gany surgery and it's quite embarrassing so I went to see a herbalist and so he put me in medication and then I went to see the gynecologist and she wanted to bring me in on the June of 22 to have a coil put on

so I said I'd like to try the herbal medicine first and so I tried the herbal medicine but by August it worked partially. It did help and I didn't have as much blood loss but I was still bleeding basically

every day four, three or four months and so then I rang the consultant up in August and I said look I can't deal with this anymore and I'd like to be put on the list again for

a coil which I was you know it was mentioned before and I'm due for review in September so they put me on a cancellation witness and I went for my coil insertion on the 30th of September 22

and so whenever they did the coil insertion my womb looked fine they weren't concerned at all and so whenever they rang me then in December out of the blue and said had you been for gain a surgery and I said, yes, I had a coil to them.

And then they said, well, could you come in to talk to us about the results? And I said, okay, well, today. So then the alarm bells start going. Yes. And bring somebody with you. So then, you know, you did. So you knew there was something. Yeah, I knew.

Yeah. And so then I went into Derry that day. That was where my biopsy had been done. And that's the region of working or out living. So I went and my cousin went with me and I was told that I had stage 1A and amatrial cancer. And so because I'd worked in Beaver Park with radio therapy, I said, so well I need internal radiotherapy. And I was told no, I wouldn't at that stage because they thought they'd caught it early enough. But because it hadn't been red-slide because it waited for 12 weeks by the time.

I had my MRI done. It had spread from my endometrium into my myomit, just unto it slightly. So I was stage 1B, and I needed an internal radiotherapy and a full hysterectomy. So I had a surgical menopause, even though I was 54

and I had sort of started the menopause, and I had some symptoms, but it was a bit like my mum. She stales through or seemingly staled through. and when I was on the Western Trust, the surgeon there said, don't touch estrogen, you know, you can't take it.

So then because I had endometrial cancer, they sent me to the Belfast Trust. And I'd worked on the Belfast Trust before. And I spoke to one of the oncologists and I said I was having a lot of brain fog. And Lunders Letter could get back to work, etc. So she said, we'll refer you to the HRT clinic in Belfast in the matter, which you'll have to wait a year before you can take estrogen.

So I was happy enough, I suppose, to go with that. And then the reason I contacted you was I thought maybe I could go in testosterone if I wasn't on estrogen, you know, and get my brain function back. So that was really, you know, why I contacted you. Yes. And I do remember actually the first time I met you because I was really struck that you who's been a very dedicated healthcare professional working as a nurse was really struggling even to, I don't want to be rude, but even to get a sentence together.

It was quite difficult to sort of, would that be fair to say? I'm sorry, Leslie. I don't want to undermine you. No, I completely floored me. And I remember you trying to explain how you were feeling and everything. but your words weren't like coming out. You're quite hard to actually understand what was going on. But you also were very frightened and scared because you didn't want to end your career.

You knew you still had more to give to your job and to your life as well. And even your, you know, you enjoy reading and everything else. You felt like things have been taken away from you and you had no control, which I hear a lot in the clinic. Yeah, I just felt. like, you know the ad on the TV, McMillan and the man in the desert with the wind howling around him?

And I remember my cousin saying, and I find this a lot of people who have cancer, they treat you, they cut out whatever they need to cut out the surgeons and the oncologists do whatever they need to do. And you're dropped, you're dropped, and you drown. Like I drowned emotionally, physically. spiritually, mentally, I drowned.

And my cousin said, Leslie, I watched you drown. And unless you have faith or a purpose or a way through. But my reason for contacting you as well was, I'm not married. I don't have a huge income. I had savings. But, you know, those were running out. Yes, I'm well doing because I'm in the NHS and I get

six months low pay, six months half pay. But that runs out and there are no benefit. There's a McMillan grant of up to £300 which doesn't cover very much. And you're sort of left to flounder. So I'd go on to, there's an organisation in Cookstown, which is a voluntary organisation. I'm carous and I got counselling

but you only get six sessions and then you know you're sort of expelled or you know you have to sort of then figure out the next stage of the journey yourself and because my brain

wasn't working I couldn't get my thoughts at all and I thought how will I ever manage to go back and be a nurse and do the job I do and be articulate with health professionals and patients and be compassionate and I was exhausted. I wasn't really sleeping and I was doing all that I'd been asked to do by the health professionals. I've gone to see a janitory, physiogny, physioles and I had done the

exercises and the things that I was advised to do. And the one thing that really helped as well as that HRT was, there's an organization in Northern Ireland called Action Cancer and I went to a positive loving program through them and they also did a menopause HRT when you've had cancer

and that really helped you know and my cousin who is a nurse as well she came alongside and she said Leslie the benefits far outweigh the risk my cancer was estrogen receptive and they just bandy that

about like no man and but they don't actually think of the consequences for your life and I knew I needed to get back to work and I've got back to work with on the year because I was in HRT but if I hadn't been on HRT I may not have been able to get back to work and that's really significant and important and as many people know who are listening and I know you know as well Leslie is a lot of my work is are just about choice and in medicine when I started doing medicine. I did a lot of hospital medicine and it wasn't about choice. It was about prescribing, making a diagnosis, giving people medication, reviewing them in a clinic and an outpatient setting in the hospital. Never once did I really think about the continuity of care because

in hospital often, especially as a junior doctor, you've moved on in six months. You don't see the people. You don't have this, as you know, the sort of long-term relationship. And then in general practice, my trainer said to me, Louise, you're going to have to be careful here because these these are people, they're not diseases. You have to get to know them and you have to share any uncertainty with them, but you have to enable them to be part of their treatment journey. And I wasn't sure what he was talking about at the start. But it's so important.

I do not live other people's lives. I do not know what it's like to have endometrial cancer. And I do not know what it's like to live after endometrial cancer. I've had a hysterectomy for another reason that was benign. So I sort of know that. I've been menopausal, but my menopause is different to yours and ours is different to other peoples. And so in medicine, I find it really hard to just say no. And it's because often people say, well, we haven't got good evidence. We're never going to have good evidence to certain things.

But then even if we do have good evidence in 20 or 50 or 100 years time, it's not going to help you in that immediate situation. And then when we look at endometrial cancer, so that's cancer of the lining of the womb, there's about 9,700 cases in the UK. So it's common, but it's not the commonest cancer, as you know, but actually the life expectancy from it is really good. Like, I would never want to choose a cancer, but if I was choosing one, I would choose an early stage low-grade endometrial cancer because it's a curable disease and actually outlook from it is better than if I'd been diagnosed with an osteoprotic hip fracture, for example. You know that as well as I do.

and which is good. So yours was caught early. That's great. You know, really, hopefully, we can never say 100% in anything we do. But hopefully it's a curative operation that we've had in treatments. So you've got your next journey to look at and embrace and enjoy, hopefully. When we look at these receptor statuses, as many people listening know, we've got estrogen receptors on every single cell in our body. So it's no surprise that you've got estrogen receptors on your cancer. But that's a good thing, because, If you didn't have estrogen receptors, it often shows that the cancer is mutated, and sometimes that means it's become a bit more aggressive. So actually, estrogen receptor positive is good, but if you find it, people then think, oh, it's been caused by estrogen, you can never have estrogen. And that's where some of the confusion lies. But if you've had all the cancer

removed, it doesn't matter so much because you're not fueling it anyway. And then often we do give progesterone as well to some women who've had immaterial to meet your cancer. And testosterone, like you quite rightly say, is another hormone that some people will benefit from for their mood, energy, concentration, stamina. And I've heard from a lot of women who say, well, I don't have a sexual partner, therefore I'm not allowed to have testosterone because I don't need a sexual libido. And I find that's really quite harrowing because it's not just about improving libido is by how testosterone can help. So often the combination of the right hormones, and you mentioned

about pelvic floor and vaginal hormones are very safe for women who've had cancer as well, including breast cancer, because they only work locally. And certainly there's a lot of women who have vaginal symptoms and urinary symptoms. And that's really important to consider as well. So I know when we first met, we had a conversation. I put everything out and said, you can try and see because God forbid if your cancer came back in the first three months after being on HRT it wouldn't be the HRT it would have come back anyway so in three months you can try and then you can decide and it's easier to decide once you've started something because otherwise you don't know how you're going to feel and I'm pretty sure that was a conversation we had because that's

what I usually have with patients so you decided to try and you started to feel better to Yeah, yeah, I mean, basically sort of a week, maybe, you know, and I used to have dry eyes and I used to see and all that has gone. And I was sort of maybe starting to have nights with and that's gone. And I have to use a day later once a week just to keep for examinations and that. And that has helped with all of that and, you know, the pastries. and I've gone to my GP and she has agreed to give me estrogen. So then I only really get the pestries and the testosterone from use and health. And it's great just that I have my life back.

I have quality of life. Cancer surgeons and oncologists think about coming today. I think about quality. Yes. And quality of life is if you don't have quality of life, you know, life's very, very difficult. And I've seen so many people may have breast cancer or other cancers

and they're not on HRT and they struggle daily. And it's like a, I don't want cancer or endometrial cancer or my menopauseurgical or non-surgical to be a defining moment in my life. I want to move on from this. And sometimes it just seems like a surreal nightmare.

it's gone. I'm starting to, you know, I'm working again. I'm looking into doing maybe lay ministry within my church because I have my head back and I don't have fatigue. I'm able to sleep well and I'm able to think cognitively well. And also for long term, I don't want, my mum had spinal fracture, she had cloned cancer. There is a history of, you know, dementia. I don't really want to go down those roads. And I think probably the long-term effects of HRT haven't been written yet because I just think if there are receptors in your brain and there's so many neurological diseases and I have to probably work till I'm 67 because of the government and the mismanagement of the pension

schemes, etc. So because I'll have to work till I'm 67. If I wasn't on HRT, I wouldn't be able to do that. And it's life changing. Yeah. And, you know, I hear it a lot. And there's a lot of people who are really skeptical about HRT and think that women take it for lifestyle or for nice skin and hair. And I find that really both upsetting but also very disparaging towards women, actually,

because we are more than our skin and hair. we are about our brains more than anything else. And this morning I was lecturing a divisional meeting for the Royal College of Psychiatrists. So there were lots of psychiatrists in the meeting. And I lectured to them for an hour and then we had half an hour of loads of questions. It was wonderful. But it is a cognitive disorder. The commonest symptom actually is more brain fog memory problems.

But also low self-esteem, reduce self-worth very common. So women do become invisible. And in my updated book, the paperback book of the definitive guide, I've written, well, we write a lot about the symptoms, but Joanne Harris, who as an author, wrote about women being invisible and how convenient it is in society for women to be unseen, unheard. And it's almost like this you put up and shut up. You know, you should be thankful that you've had treatment for cancer and, you know, you're still alive. but actually that isn't enough for a lot of people.

No. You know, and I think it's, it is about choice. I think a lot, and I know this sounds a bit weird, but see what you think of it. But I think a lot about when I buy a car, my daughter the other day was asking me about the first car I ever bought as a medical student. And I was very lucky. I saved a lot of money. And then my grandfather said, I'm going to give you a bit of money. So you have it now before I die because I don't want you to get as bad a car as you're going to get.

So I had a very small. Vauxhall Nova. It was quite a few years old and I cycled down to Stockport from Manchester to the garage and I met my mum there who got the train up so I could show her this car at the garage. So cycling down was quite a long way. I didn't have a helmet. I had a really old clapped out bike but that's what I used then. And then I got it in the car. I liked it. It sounds really vacuous. I like the interior. I like the colour. The salesman was telling me how brilliant and reliable and this, that and the other it was. So I bought it and it was the best thing that I'd done for a long time. I really enjoyed it.

It took me off to the Lake District and did all sorts of adventures in it. I didn't read a randomised control study seeing if it was the best car. I didn't think about my safety. I didn't think about my safety getting on my bike. But that for me was what I wanted and I was very fortunate to be able to have this car. But I think about when we drive our car, there is a risk of crash. Of course there is and the roads have got busier. So over the last 30 years it's more of a risk.

risk, but I still drive. I drive to pick my children up. I drive to meet people, but that's my choice. I'm an independent adult. No one's telling me that the car I've got now drives a lot faster than the car I first got when I was 20. But actually, that's okay. I'm allowed to choose. But I think you've made, well, I know you've made choices that are right for you. And also, no one's forcing you to take HRT or not take HRT. But you had that decision that, ability to decide, taken away from you when you had your operation. And that's what I feel really sad with this, because you are allowed to decide which is the biggest benefit you're getting and which is the biggest risk. But actually, it's not just a risk for you of not taking it.

If you weren't on HRT, I don't think you would have been able to continue looking after your mother. You wouldn't have been able to continue working as a nurse. So other people would have been impacted by that decision? Yeah, I think that's a major factor, you know, and if I hadn't, I wouldn't have been able to pay my mortgage. I wouldn't have been able to keep my mum in the home that she's lived on for most of her life. And those things carry a lot of emotional weight and a lot of profound weight, you know, that I can keep my mum in her own home and that I can go out to work and earn enough and that I can adjust my hours to that suit me and that I have a quality of life and it's not about all the research studies and all that I know all

you know you hear all of that and it's about the quality of life today and yes I may develop cancer again I hope I don't but if I do They can treat cancer, but they can't treat osteoporosis in your spine. They have no treatment for dementia. They're working at it. They may develop it, but, you know, right now I don't have dementia. I'm back at work. I have a life that I am happy with and content with.

And I have a dog that I can take out walking every day. you know and if I wasn't on HRT I don't know that I would have been able to look after my mum and keep the whole thing going and what of the reasons I did was just mirrors is just to give me a better quality of life as well you know just time to be able to and also I think radiotherapy causes fatigue you know yes it does yeah and sometimes I get really tired and I'm building up my resilience again and I can see a way forward. Whereas when you first met me, I didn't know how I was going to get through the next day. And I didn't want to go on big heavy doses of antidepressants.

I'm a friend who's on an antidepressant because she's not in HRT because she, you know, and it's just not a way to live your life. And I think as well, a lot of them, you know, consultants and oncologists, they don't really think about your life. They don't think about the ramifications. And it's not patient-centered. It's just it's surgeon-centered or oncology-centered. They treat the cancer. They forget about your life.

They forget about that you're a person that you have needs and you have maybe a husband. or a family. And I don't know how people who have husbands and family who, you know, I was just saying friends struggle deeply with symptoms because they're not allowed on HRT. Absolutely. And the suffering, not just in the UK, but globally, is sort of palpable, really.

And a lot of it is avoidable and life is hard enough anyway. So I'm so grateful for you sharing so, well, it's beautiful. but awful at the same time. Yeah. What you've experienced, that the strength of character that you have has just been shining through. And I knew that when I first met you

that this is somebody who's got some fire in her belly. She knows what she wants. You're a really determined lady and you have been over your years, but it's come back. And I just feel such a privilege to be part of it, Leslie. And for you to share your story,

I'm really, really grateful. So before we finish, you probably know I always, ask for three take-home tips. But I'm really keen to ask you three things that have helped you have the strength to make the decision and choices that you have, not just about your treatment, but in life in general, because I think listening to you, there's a lot we can all learn from you. Okay, thank you. Well, I have a faith. I think if you have a faith, that helps. Not everybody will have the same faith as I have, and that's fine. And I think if you go out,

and try and there's a lot of stuff out there for cancer that isn't really research-based. It's not good at all. And you have to sort of falter through and I'm quite proactive. And so I found action cancer. I'd heard of them before and all of this. I didn't really take them on board because it wasn't relevant to me. but through that I've learned about scar therapy scar therapy has really helped along my scar

because it was just quite sore and would have caused me a bit of pain and that has really helped with lymphedema around my scar and also just that whenever you've gone through this you have to say goodbye to the old you the old you has gone the old Leslie Henry

has gone she's not coming back and away she needed to go she needed to you know because she was mad she was you know

somebody said you know I used to be like a Ferrari you're like a Ferrari Louise I was like a Ferrari and then I became like a punine entrapped

you know because I just couldn't so now I just you have to learn to pace yourself you know and also watch film

watch things that encourage you like the darkest are what Winston Churchill went through and you know how he had to persevere listen to all the crap you know that you're told and discern through all the crap

and I have loads of friends and some really good friends some friends I've let go off through this you know and it's just I think trusting yourself and listen to your you know and think that you are worthwhile and that your life matters you know it may be that

you're a mum at home or whatever but you matter to the people who love you and even if you're in a difficult relationship your life matters and also through doing different programs there's a positive living program that's done in Northern Ireland and it's two days you can go to coaching and it's just about how to re-energize your life and refocus and rebuild. But HART has been my savior and all of this and has got me out of, there's a song in the Bible and says, you know, I was putting Mary Clay and God lifted me out. Well, HRT was God to help lifting me out of the Maori clay. Amazing. Amazing way to end and listen to your heart, I think, is just wonderful. So thank you so much, Leslie, for your time and sharing so many wonderful words with everyone.

So I really appreciate it. Thank you. Yeah. And I hope it helps. Of course it does. That's what about. Yeah. Health and others. Absolutely. I'm passing it all of love.

Yeah. And thank you. Thank you for all your health. You're brilliant. Oh, thank you. Yeah. You can find out more about Newson Health Group by visiting www.new.combe. And you can download.

the free Balance app on the App Store or Google Play.