Endometrial cancer, the menopause and HRT

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:

1. 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.
2. 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.
3. Be prepared to say goodbye to the old you. She’s not coming back and in a way, she needs to go.
4. Trust in yourself and listen to your heart. You are worthwhile and your life matters.

Click here to find out more about Newson Health

Transcript

Dr Louise: [00:00:11] Hello, I’m Doctor Louise Newson, I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-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 Newson 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, Lesley, to my podcast today. [00:01:19][68.7]

Lesley: [00:01:21] Hi Louise, thank you. [00:01:21][0.3]

Dr Louise: [00:01:22] 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? [00:01:31][9.3]

Lesley: [00:01:33] So I’m a nurse, I trained as a nurse a long time ago, in July 87 I started, which is years ago. And I was traditionally trained and I’m now a district sister and I have a caseload with another sister. That’s sort of quite high pressured. Lots of decisions to make about patients and their care. And so I have a background and I worked on oncology before, years ago, at Belvoir Park, Northern Ireland, and that’s where I’m from. And I look after my mum. She’s elderly. She’s 92. [00:02:10][37.2]

Dr Louise: [00:02:11] Wow. OK. And nursing has changed over the years. 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 had happened for your symptoms to occur in you, not to be able to work in the same way? [00:02:48][37.1]

Lesley: [00:02:48] Yeah. So I suppose I have had a long history of having to heavy periods for years and years, and my mum had the same. So I went, in 2021, I went on HRT at the recommendation of my friend because I was having dry eyes, but mostly it was, I wasn’t having a hot flushes and I wasn’t have a night sweats. 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 to prevent… My mum had colon cancer. So I just wanted to sort of, so my cousin actually told me that the benefits far outweigh the risk. So I took HRT patch before I ever met you, before I knew you existed. And then because I had to go the progesterone oestrogen patch. So when I was on oestrogen it was great and when I went on the progesterone patch, I had huge blood loss. I had clots the size of my palm of my hand and my haemoglobin dropped from 12 to 8. So I came off the HRT because I just couldn’t sort of continue with it. And I went then and saw my GP and she referred me for tests. I had a hysteroscopy in the December of that year and in January the biopsy came back clear. Then they wanted to put a coil in. But I have never been sexually active, OK. Because I have a faith and I don’t believe I should live in sin, etc etc and I’ve never met anybody that I’d want to spend the rest of my life with. A bit fussy and choosy, but that’s fair. Yeah. So I went to see a herbalist because I didn’t want gynae surgery. And, it’s quite embarrassing. So I went to see a herbalist. So he put me on medication, and then I went to the gynecologist and she wanted to bring me in on the June of 22 to have a coil put in. So I said I’d like to try the herbal medicine first. 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 for three or four months. 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, but I was, you know, it was mentioned before and I’m due for review in September. So they put me on a cancellation waiting list 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. So whenever, they rang me then in December out of the blue, said, have you been for gynae surgery? And I said yes, I had a coil put in. And then they said, well, could you come in to talk to us about the results? I said, okay, when? Today. So then the alarm bells start going. And bring somebody with you. So then you know… [00:06:22][214.1]

Dr Louise: [00:06:23] So you knew there was something? [00:06:24][1.4]

Lesley: [00:06:25] Yeah I knew. So then I went into Derry that day, that was where my biopsy had been done. And that’s the region I work in or live in. So, I went and my cousin went with me. I was told that I have stage 1A endometriol cancer. And so because I’d worked in Belvoir Park with radiotherapy I said so will I need internal radiotherapy. And I was told, no, I wasn’t at that stage because they thought they’d caught it early enough. But because it hadn’t been red-flagged, because they’d waited for 12 weeks, by the time I had my MRI done it had spread from my endometrium to my myometrium, just on to it slightly, so I was stage 1b, and I needed then 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 I was a bit like my mum. She sailed through or seemingly sailed through. And when I was on the last terms, the surgeon there said, don’t touch oestrogen, you know, you can’t take it. So then because I had endometrial cancer, they sent me to the Belfast Trust. I worked in the Belfast Trust before. And I spoke to one of the oncologists and I said I was having a lot of brain fog and wondered whether I could get back to work, etc. so she said, we’ll refer you to the charity clinic in Belfast. And no matter what, but you’ll have to wait a year before you can take oestrogen. 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 on testosterone if I wasn’t on oestrogen, you know, and get my brain function back. So that was really, you know why I contacted you. [00:08:30][124.6]

Dr Louise: [00:08:30] 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, Lesley, I don’t want to undermine you, but… [00:08:51][20.9]

Lesley: [00:08:53] No, it completely floored me. [00:08:54][1.1]

Dr Louise: [00:08:55] And I remember you trying to explain how you were feeling and everything, but your words weren’t quite coming out, you were quite hard to actually understand what was going on. But you were 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, you know, enjoy reading and everything else. You felt like things had been taken away from you and you had no control, which I hear a lot in the clinic. [00:09:29][34.0]

Lesley: [00:09:30] Yeah. I just felt like, you know, the ad on the TV, Macmillan and the man in the desert with the wind howling round him. And I remember my cousin saying, and I find this a lot with 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 down. Like I drowned emotionally, physically, spiritually, mentally, I drowned. My cousin said, Lesley 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’ full pay, six months’ half pay but that runs out. And there are no benefits. There are no, you know, there’s a Macmillan grants of up to £300, which doesn’t, you know, cover very much. And you’re sort of left to flounder. So I’d gone to, there’s an organisation in Cookstown which is a volunteer organisation. 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 out 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. 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’d gone to see a genito-urinary physio and I had done their exercises and the things that I was advised to do. And the one thing that really helped as well as the HRT was there’s an organisation in Northern Ireland called Action Cancer, and I went to a positive living programme through them. And they also did a menopause, HRT when you’ve had cancer. And that really helped, you know. My cousin, who is a nurse as well, she came alongside and she said, Lesley, the benefits far outweigh the risk. My cancer is oestrogen receptive and they just bandy that about like, no man. But they don’t actually think of the consequences for your life. And I knew I needed to get back to work, and I got back to work within the year because I was on HRT. But if I hadn’t been on HRT, I may not have been able to get back to work. [00:12:46][196.7]

Dr Louise: [00:12:48] And that’s really significant and important. And as many people know who are listening and I know you know as well Lesley is a lot of my work is 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, in 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, this 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. And I’ve been menopausal. But my menopause is different to yours and ours is different to other people’s. 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 commonist 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 osteoporotic hip fracture, for example. You know that’s 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 you’ve had and 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 oestrogen receptors on every single cell in our body. So it’s no surprise that you’ve got oestrogen receptors on your cancer. But that’s a good thing. Because if you didn’t have oestrogen receptors, it often shows that the cancer’s mutated. And sometimes that means it’s become a bit more aggressive. So actually oestrogen receptor positive is good. But if you find it, people then think, oh, it’s been caused by oestrogen, you can never have oestrogen. 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 fuelling it anyway. And then often we do give progesterone as well to some women who’ve had endometrial 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 why 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 feel better, didn’t you? [00:17:20][272.4]

Lesley: [00:17:20] Yeah, yeah. I mean basically, sort of a week, maybe less, you know and I used to have dry eyes and all that has gone. And I was sort of maybe starting to have night sweats and that’s gone. And I have to use a dilater, once a week just to keep for examinations and that. And, that has helped with all of that and you know the pessaries. And I’ve gone to my GP, and she has agreed to give me oestrogen. So then I only really get the pessaries and the testosterone from Newson Health, and it’s great just that I have my life back. I have quality of life. Cancer surgeons and oncologists think about quantity. I think about quality. 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 who’ve had 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 menopause, surgical or non surgical, to be a defining moment of 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 lay ministery 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 fractures, she had colon cancer, there is a history of, you know, dementia. I don’t really want to go down those roads, you know, 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’d have to work till I am 67, if I wasn’t on HRT, I wouldn’t be able to do that. And it’s life changing. [00:19:54][153.1]

Dr Louise: [00:19:55] 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 the 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 a 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, reduced self-worth, are 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 is 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. 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 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 in the car, I liked it. It sounds really vacuous. I liked the interior, I liked the color. The salesman was telling me how brilliant and reliable and this, that and the other it was. So I bought it and I 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 controlled 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. 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 the 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. [00:23:41][226.4]

Lesley: [00:23:42] 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 in 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 reduce my hours to what suits me. And that I have a quality of life. And it’s not about all the research, studies and all that. I know all of, 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’m 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 one of the reasons I did reduce my hours was 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. [00:25:29][106.8]

Dr Louise: [00:25:32] Yes it does. [00:25:32][0.3]

Lesley: [00:25:33] 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. I didn’t want to go on, like, heavy doses of antidepressants. I have a friend who’s on antidepressants because she’s not on HRT because she you know. And it’s just not a way to live your life, you know? And I think as well, a lot of them, you know, consultants, oncologists, they don’t really think about your life. They don’t think about the ramifications. And it’s not patients centred. It’s just surgeon centred or oncology centred. They treat the cancer. They forget about your life. They forget about that you’re a person, that you have needs. You have maybe a husband or a family. I don’t know how people who have husbands and family do, you know, I’ve just seen them struggle deeply with symptoms because they’re not allowed’on HRT. [00:26:45][72.8]

Dr Louise: [00:26:48] 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 what you’ve experienced, but the strength of character that you have is 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 Lesley and for you to share your story. I’m really, really grateful. So before we finish, I 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. [00:27:50][61.7]

Lesley: [00:27:50] OK. 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, there’s a lot of stuff out there for cancer that isn’t really research based. That’s not good at all. And you have to sort of filter through. And I’m quite proactive. And so I found Action Cancer. I’d heard of them before all of this, I didn’t really take them onboard because it wasn’t relevant for 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 lymphoedema 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 Lesley Henry has gone. She’s not coming back and in a way, she needed to go. She needed to, you know, because she was mad. She was, you know. Somebody said, you know, I used to feel like a Ferrari. You’re like a Ferrari Louise. I was like a Ferrari, I’m now… And then I became like, a pony and trap, you know, because I just couldn’t. So now, I just… You have to learn to pace yourself. You know, and also watch, watch films, watch things that encourage you, like The Darkest Hour, what Winston Churchill went through. You know how he had to persevere, listen to all the crap, you know that you’re told. And discern through all the crap. I have loads of friends. Some really good friends. Some friends I’ve let go of through this, you know, and it’s just, I think, trust in yourself. So I just sort to think, listen to your heart. 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 you’re worth more. And also through doing different programmes, there’s a positive living programme that’s done in Northern Ireland. And it’s two days. You can go to coaching and it’s just about how to re-energise your life. And refocus and rebuild. But HRT has been my saviour in all of this and has got me out of… There’s a psalm in the Bible, it says, you know, I was put in the miry clay and God lifted me out. Well HRT, with God’s help, lifted me out of the miry clay. [00:31:24][213.6]

Dr Louise: [00:31:26] Amazing. Amazing way to end. Listen to your heart, I think is just wonderful. So thank you so much, Lesley, for your time and sharing so many wonderful words with everyone. So I really appreciate it. Thank you. [00:31:38][12.2]

Lesley: [00:31:38] Yeah. And I hope it helps. [00:31:40][1.8]

Dr Louise: [00:31:40] Course it does. [00:31:41][0.3]

Lesley: [00:31:41] That’s all it’s about, helping others. I’m passing it along. Yeah. And thank you, thank you for all your help. You’re brilliant. [00:31:49][7.7]

Dr Louise: [00:31:49] Oh. Thank you. You can find out more about Newson Health Group by visiting www.newsonhealth.co.uk. And you can download the free balance app on the App Store or Google Play. [00:31:49][0.0]

ENDS