The Dr Louise Newson Podcast - 128 - Making decisions about cancer treatment and the importance of quality of life with Steve Payne

Episode Date: November 30, 2021

In this episode, Dr Louise Newson is joined by a long-time friend, retired consultant urologist, Steve Payne. Together they discuss Steve and his wife Jan’s experience of her breast cancer and subsequent treatment that led to estrogen depletion. Steve describes the decision-making process they went through as a couple when Jan’s quality of life deteriorated due to severe urine and kidney infections, as well as other symptoms relating to a lack of estrogen. The experts talk about how some people’s experience in cancer care clinics can fall short of patients and their partners being given full and balanced information into how cancer treatments will affect your hormones and what this potentially means for your quality of life. Steve shares his honest reflections and insights about cancer care clinics and offers invaluable advice for those navigating these complex and confusing decisions at such a difficult time. Steve’s advice for making decisions about cancer treatments: Ask what the benefits, and especially the downsides, of the treatment are. It is key that you understand all the pros and cons of a treatment being recommended to you. If it’s treatment for cancer, ask about the pure cancer survival rates – once deaths from other causes have been removed from the data – to make sure you know the actual level of survival benefit that the suggested treatment offers. If you’re having side effects from breast cancer treatment due to a lack of estrogen, have a discussion about the pros and cons of taking HRT, for your particular type of cancer. Ask how taking HRT could improve your daily life and wellbeing and what benefits HRT offers for bone and heart health in the future. Ask how would taking HRT affect your pure cancer survival rate. Steve has written more about his and Jan’s experience and offers practical advice here, along with a new factsheet about making informed decisions during cancer care.

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and well-being centre here in Stratford-Bron-Aven. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based information and advice about both the perimenopause and the menopause. So today on my podcast, I'm very excited and delighted to welcome yet another man. There's a few more men coming to the podcast, which is great.

This is a man who I have in very high esteem, actually, who I've known since the year I qualified as a doctor. So Steve Payne is now a retired consultant urologist, and he's been my husband's mental for many years. So I'm very excited actually to have him here in a non-work relationship actually. But thanks Steve for coming today. You're welcome. I, as many of you know, trained at Manchester University, as did my husband.

And Paul's first job, actually, was in urology, wasn't it, Steve? So that was in 1994, so quite a long time ago. Yeah, it seems a long time ago. And just the start of his long journey. Absolutely. But he had quite difficult time because he had to cover for another doctor. and you always looked after him right from the start, actually. And it's been amazing for have somebody who's just as solid as a rock to be there to help.

Because, as you know, being a doctor isn't always plain sailing. And you just need someone who believes in you, actually. And you've always believed in porn. And it's incredible, actually. But you still work together. And certainly before COVID, you were going out and doing some charity work together, won't you? We were. Yes, we spent quite a lot of time in Ethiopia.

And in fact, the reason for this podcast today is really, emanated from our last trip. Well, that's right. So you and Paul sometimes have a few drinks. Not always, but one or two has been said. So I think it was the last night of your last trip, before COVID even occurred. You made just a throwaway comment about your lovely wife,

didn't you, to Paul? And the rest of history, as they say. So are you able to elaborate at all? Yeah, well, Paul and I, we'd been working all day, and we were having a few beers before supper. and Paul asked me how things were at home and what have you. And he knew that my wife had had breast cancer and that it had been a relatively aggressive, although entirely localised breast cancer,

and as a consequence, she had undergone chemotherapy. And after having completed the chemotherapy, she was then started on aromatase inhibitors in the form of letharazole. In the first few months after starting the letharazole, things were unchanged really, but then over perhaps the next year or so, there were subtle changes in her personality. But perhaps more importantly, she started having episodes of pylo nephritis, kidney infection. Now, she'd never had a urinary tract infection in her life prior to that. And these were really profound infection. She was really, really unwell. In fact, when she had the first one,

She started having a rigour. She started shaking in bed. And it was like being in bed with a washing machine. Anyway, to cut a long story short, she was shown to have a urinary tract infection. It was treated with antibiotics. But these problems kept recurring. And the recurrence of these problems were just making her less and less confident.

I think that's a really way of putting it. Paul and I were just chatting about this over a beer, and he said, you know, he said all of these things, that you to Eastridge would call. So I said, oh, and he said he would email you, I think, from Owasso in Ethiopia. I spoke to Jan as well. And I flew back the week before the beginning of the first lockdown. We had a chat, and Jan agreed that it would be sensible to get an opinion. and she'd actually stopped the lexazole

because she just wasn't happy in continuing it. And we came down to Stratford and saw you a couple of days later and you gave Jan some advice about her hormonal imbalance. So perhaps you want to carry on from there. Yeah, and it's interesting, isn't it? Because it was all quite new information.

I mean, we just had an open conversation. I didn't rush and prescribe anything in the first consultation. It was really a place for Janet especially to talk about her journey and what happened and the information she had or rather hadn't been given really about the follow-up from the hormone blockade and what it might mean and also what the menopause might mean for her. And I remember me very sad actually listening to Hadar's consultation. She showed me a piece of paper that she'd been given.

There wasn't very much information really about the effects or side effects of Letrazoan. And letharazole is a, as you say, it's a remitase inhibitor, so it blocks every scrap of estrogen in the body. It's like being wrung out from a, with a sponge, and there's no drop of moisture. There's no drop of estrogen at all in the body. And it is thought, for some women, it will help reduce their risk of recurrence, but it's a very small, the most important treatment, if you like, for the breast cancers, you know, Steve is an operation, and then if women need chemotherapy than chemotherapy, but the hormone blocker treatments is a very small percentage. When you're talking about lots of women, obviously that might make a difference, but actually

for individual women, the benefits are quite small. But she was also getting joint pains and difficult walking, and she enjoys walking, doesn't she? So that was limiting her life as well. And she just generally felt older than perhaps she thought she should do at her age. And we hear this a lot and bone pain can be very common. I speak to a lot of women who actually wake in the night crying because the bone pain is so severe on their netresol. So the first thing is just having information is really crucial. And knowing that you can change your mind about treatment. As doctors, we're very keen at giving treatment, but not also always as keen as stopping or changing treatment. So the first thing really for Janet was to just think about

should she stop her treatment for a short period of time and see if that makes any difference and have a like a drug holiday if you like for a few weeks and there are other drugs such as Tamoxifen that don't block every ounce of estrogen as well. So I think the first thing actually I really noticed in that consultation for both of you was that there was some hope. There was something that you could both do together to try and make some educated choices about what she should do. I don't know if you felt that in the consultation.

Very much so. And I agree with you with regard to follow up and information. Number one, there was no follow-up. Her last follow-up was actually a month before she finished her chemotherapy. And then everything was sort of handed down to the GP to manage from there on out with remote contact to the oncologist. And that wasn't just because of lockdown. That was the standard protocol. and the amount of information that you were given was small,

but the information that you were given certainly seemed to have an element of bias towards active treatment. And once Jan had these problems with pylonephritis, I started actually looking at the data in the information that we'd been given. And the thing that I was really, really surprised about, and you Louise reinforced this was the predict breast and the scoring system, which is widely used in advising people about treatments, gave you 5, 10, 15 year survival dependent upon the stage and the grade of the tumour that you had, but it included deaths for all reasons and there was no pure cancer survival rates attributed dependent upon the various scores that you're put in in the various boxes. Predict breast cancer is one of those things where you put your money in the slot

and you pull the handle and it comes out with an answer for you. Absolutely. And anyone can access this. This is free on a website. It's an NHS tool. It's predict breast. And you put in the type of cancer, the size, the grade, whether it's estrogen receptor positive and it gives you these graphs, don't they, of what will improve? But like you say it's very hard to know because a lot of people might be run over by bus or have, you know, something, you know, the people are going to die when they've had breast cancer, not always from breast cancer. And that's makes it very difficult, doesn't it? Yeah. And I think even for us, it was when you've just been diagnosed with breast cancer and you're given the predict breast cancer

data, you sort of look at it and think, oh, goodness, yeah, we need to do something active about that. Yes, we need to comply with absolutely everything. that is recommended. But when you actually take out the deaths due to other causes, and then you've got the pure cancer death rate over time, then it puts an entirely different perspective on the equation. Yes, as you say, surgery and systemic chemotherapy are important, but the data that is out there with regard to the benefit from hormonal manipulation is really not as robust as is often presented, if I can put it like that. No, I think you're absolutely right. And I have a real, you know, I've got a very inquisitive mind.

I really want evidence-based everything, especially, you know, as a physician who want to work with the evidence, but sometimes the evidence isn't there. Not because it's wrong, it's just because the studies haven't been done. The other thing is looking at the risks. We always talk about benefits, but we have to think about risks. And actually blocking estrogen completely in a woman is not without risks. Obviously, we've already said there can be symptoms. But we actually know that women who have estrogen blocked,

either naturally because there have been menopause, they have low estrogen or blocked by some of these drugs, have an increased risk of heart disease, diabetes, osteoporitis, dementia. And I'm still trying to find a study really looking at that. with the aromatase inhibitors because there are harms as well and that's not really always discussed either is it with individuals no i mean i guess as an oncologist your desire really is to get the best cancer curate that you can however that often seems to be to the detriment of quality of life and i think there's got to be a balance between quantity and quality of life

and that's a discussion. And obviously, that's an important discussion dependent upon the age of the patient that's in front of you. Absolutely. And quality of life is very, very hard to measure, isn't it? It's not as easy to measure, but it's also very individualised as well. And it often changes with time.

So quality of my life now compared to 20 years ago or when I first met you 30 years ago and I had no money as a student, it's different. But actually, the quality was probably better then because I had no responsibilities. I didn't have my children and all those other stuff going on. So it's very hard to measure, actually. And I think also what we want out of the quality of our life depends on how it's affecting

us day to day. So if Jan was taking this medication and had no symptoms whatsoever, was prepared to maybe take a bit of a short-term risk with our health for the heart disease and whatever knowing she'll be off it soon, absolutely fine. But then her quality of life was being compromised by her euro. infection, kidney infections and her other symptoms as well. So that's when it has to be an individualised choice, isn't it? Yes, it does. And I mean, the problem is with any guideline and oncologists are pretty much determined to follow guidelines unless somebody is within a trial.

The problem with guidelines is it's a one-size-fits-all solution and it doesn't, you know, individualise the treatment that is received to the needs of that individual. in front of you. And part of the problem with guidelines, of course, is that if you veer away from them, then you have to justify why you have that. Yeah, and that makes it very difficult then for the patients. And the other thing I find quite hard, certainly in my clinic, when there's one doctor saying one thing and I'm saying something else, and the poor patients then in the middle and they're thinking, well, who do I believe, who do I trust? And we've had some women who've had breast cancer in the past and their doctors have made them to sign a

disclaimer to say they take full responsibility as the patient does and the doctor doesn't always wash their hands off them and I find that really difficult actually because there's no right or wrong in medicine is that no there isn't it is an individual art if we can call it at a home you know I think the problem is that having those discussions takes time yes and that of course is something that seems to be in very short supply both in general practice and in specialist practice Yeah, but I'm sort of learning. We're analysing some of the data from the clinic actually. We recently did one, a survey looking at people who come to the clinic.

And the year before they come to the clinic, 17% of them, so nearly one in five, have seen at least six GPs in the year before they came because of their menopause or perimenopausal symptoms. Then since they've been to the clinic, 0.1% of those people have been to see more than six GPs, because they don't need to because they're feeling well. So that actually frees up a lot of time. So it's actually preloading is really important. And investing in that initial quality time is really important. But our clinics certainly in the NHS aren't set up for that because it's file them up, get through very quickly.

And then you don't have time or head space. And it's actually having their heads. And the confidence, actually, to sometimes involve the patients more than perhaps certainly in the 90s when I met you. We didn't really involve patients much at all. It was just tell them what to do and they did it and things have changed. No, but as you know from Paul's work, because Paul and I work pretty much in the same environment, we saw a lot of complex regional, super regional patients, is that sometimes spending the time explaining why you were or weren't more important to do something

was often time well invested. Yes. And certainly as a surgeon, I found that spending that time and not operating on something, one whose expectations we couldn't match was time very, very well invested. Yes. Yeah, absolutely. And I think it's also, we talk about the patient, but it's involving those around as well. And I know, you know, you're obviously very close to Jan and been married for many years.

And it was lovely, I'm sure, for her as well, to have your support. But it was lovely for me to, you know, watch you both interact and decide together. And I think that probably gave her confidence as well, didn't it? Yeah, and I mean, it's difficult when you're a medical professional and you're trying to advise somebody close to you because you want it to be their decision. And in fact, you know, I mean, I tried to stay out of the vast majority of her decision making. But there were just a few occasions where I advised when she requested it. Yeah, which is really important. So she stopped taking this aromatase inhibitor, didn't she?

She did. She went on to tamoxifen. Yes, yeah. And that helped a little bit actually, didn't it? And then she's using some hormones, isn't she now? Yeah, yeah. She went on to the tomoxifen and whether it was just stopping the letrozole, it's unclear. But certainly when she was on the tomoxyfen, the incidence of urinary tract infection

just completely disappeared. But she then subsequently made the decision after I'd looked at the data and we'd discussed the lack of really robust evidence about cancer survival benefit without taking additional hormones, that she decided that she would take some hormones. And I think it wouldn't be unreasonable to say that, you know, there has been benefit since that time. Of course, it's really difficult when you're in your 60s to say what is age-related, what is related to the treatments that you've been on. and disappointing fact, Louise, you know, it's not going to be the same for you when you're in your late 60s as it is now.

Things do change. Without doubt, I can say that, you know, she has significantly benefited since she started on HRT from a multiplicity of different points of view, but particularly with regard to her nobility. I think an awful lot of the joint type problems are much, much less intrusive now than they were before she started them. Yeah, which is so interesting, isn't it? I mean, I hadn't realised until a few years ago how important estrogen but also testosterone, both female hormones are as anti-inflammatories in the muscles and the joints, especially the joints. And it's no coincidence really that osteoarthritis is so much more common in women. And women who take HRT actually have a lower.

risk of having joint replacements, actually, the lower incidence of joint replacements due to osteoarthritis. So we know it's all there, but we've not really joined the dots and seen, but actually when you can see women exercising, there's more benefits for their future health as well, not just her quality of life, but her future health is being improved as well. And she's still not getting any of these kidney infections. No, she's had absolutely none at all since she stopped the electrosol. And as I say, it's difficult to be explicit, but I think we sort of change things in a slow step-by-step manner so that we could see whether things were improving with one thing before we moved on to the next. And that's exactly the right thing to do.

I think anything in medicine, isn't it? You want to have confidence in what you're doing. And I said to a patient yesterday, actually, there were a few things that needed changing. And I said, let's do one thing at a time. She was very anxious. And I said, you know, if I gave you a blue smarting and you didn't feel confident you would get side effects from it. You wouldn't feel right. So it's very, very important. But I think it's also very important to know that the patients are in control. And certainly it's a lot harder when you're under the knife of a surgeon,

you're not in control at all. But with any hormonal treatment, they are completely in control. And it's very reversible. So Jan could stop anything now and tomorrow, you know, it would be out of a system. And that's really important to know, isn't it? Yeah. Equally, though, I think it's important to know what things like the half-lives of these medications are. You know, so how long it's going to be before you know that the effect of that drug is washed out before you start something else.

Yes, absolutely, yeah. And just to sort of mention, really, even if people don't have systemic HRT, there is local hormonal treatment, so vagina on estrogen, which is very safe for anyone that's had breast cancer. And that can work very well to help reduce the risk of cystitis and infections and kidney infections as well, doesn't it? Yeah, yeah, yeah. And I mean, she's been on both local and systemic therapy. So it's a little bit difficult to be absolutely precise as to which has been beneficial. And of course, the issue is that the oncologist will support the prescription of the local estrogen with tamoxifen,

but won't support the prescription of HRT. which isn't a particular issue to us, but I can imagine that it would be to a lot of women. Yeah, and it is. And I think what we are fortunate about is we've got these shared decision-making guidance that came out from Nice in June of this year. And I think that's pivotal for any type of treatment,

but especially with hormones. And I think for those women who are a bit more complicated, if you like, or they've been refused treatment, then they can use these shared decision-making guidance. And I think especially when women have had breast, breast cancer. It has to be shared and it has to be thinking about the patients. And there are so many, as you say, different types of breast cancer. There's different times since people have had it as well. So it's not a one-size-fits-all, you know, and a lot of it is actually easier to make a

decision if a woman's had quite a long time. You know, we see people who've had breast cancer 20 years ago and they're still told they can't have HRT. And that doesn't really make sense because their risk then of a recurrence or a new breast cancer is the same as someone that hasn't had breast cancer. So we have to take every individual, and it's really important. We do that with everything in medicine. You have to look at the bigger picture, don't you? We do, but unfortunately, as far as the NHS is concerned, it's very much a bums on seats and a relativity of throughput to actually get results. But I do get the feeling that the oncologists are basically interested in the number of people that they can get to survive the treatment for the cancer

that they've had. And that quality of life issues really don't matter as much to them. And it's surprising, I find that they're not particularly receptive to the notion that quality of life matters. And again, in my practice, a lot of it was about quality of life. Yes, we can do an operation. But is it going to benefit you? Is it going to benefit the quality of life and is it going to match your expectations? And I don't think that those are the sort of conversations that a lot of people have with oncologists. No. It's interesting. I actually want, I don't know if you know, Steve, I wanted to become an oncologist. That was what I wanted to do. And after we went to New Zealand and came back and I did a job in Southampton as a junior doctor with an oncology team. And it really put me

off actually because I just thought these people are not been spoken to almost. It's very much, let's work out which chemotherapy to give them or which radiotherapy regime to give them. Bed 10 can have this, bed 11 can have this and they see them coming in and excruciating pain or with spinal cord compression where they can't walk and it was very much about what dose of everything to give. And I thought actually they need their handholding, they need talking to, their family need talking to, they need to have expectations that are realistic as well. And I found it really uncomfortable, so I changed my mind. Yeah, there's an element of depersonalisation and almost slavish adherence to guidelines

and or trial formulations. Now, obviously, we wouldn't be where we are with breast cancer had it not been for a lot of those trials. Absolutely. However, it does just make you wonder what the quality of life of the participants in those trials was like. I think so. And I think now women are still.

starting to realise and speak out, which is really important. But also the work that you've been doing behind the scenes actually with us is really key. So you've been helping write something, actually, haven't you, that we're putting on the website. Just explain a bit about what you've been doing, Steve, because I'm really grateful to you for it. Yeah, no, I mean, one of the things that I've been doing since I've retired is I've been working on an online learning resource

and commissioning various different things about professionalism in medicine or in urology in particular. And that's really opened my eyes to this debate about things like, you know, you read a headline on something or about something, and then you look at what's actually written underneath. And it really doesn't confirm what the headline says. And I think the problem is in popular media in particular is that there's an awful lot of sound bites out there

that are unverified by reliable long-term data. I could go on about this for about an hour, Louise, but the issue is that unless you actually look at the quality of data and can interpret it, then I think it's really, really difficult. And there are loads of biases that people utilize or bring into play in analysis of the results. Goodness, you only need to look at all of the stuff that's been in the papers or on the news over the pandemic and you realize that one minute Sweden is the best place in the world because they're not locking anything down and the next thing that you read but on about the back page is that they've had the highest death rate from COVID in their care homes in the world.

So the media just pick and choose short-term poor quality data to be able to make a decent headline. Yes. And I fear that we have a tendency to do that in medicine. Yeah, we do. And I think when we're all really busy, it is just take home points, isn't it? And, you know, and I think I've been very fortunate because I've worked part-time as a doctor. I've had time to reflect and think and read and make sure I go back to the proper evidence. But most people don't because you're in a hamster wheel and you've just given one line of information. And so obviously a lot of the work I'm doing now, not just about educating health professionals, but is empowering women and their partners and their families and their work colleagues with evidence-based information. So one of the new resources we've got is something that you've written for us, Steve, which is great. Really putting all this that we've been speaking about today into perspective, isn't it, which I think will help so many people?

Yeah, hopefully so. I mean, I think that the problem is that data or certain elements of data so so readily available now. People can look things up on the internet. They may not necessarily be able to contextualise them, and they depend upon. professionals to do that for them. But an awful lot of stuff that you read now is not necessarily that well researched. And even if it's been peer reviewed, it's been looked at by other professionals to say, yes, this is a reasonable bit of science. I came across an interesting article recently, which suggested that over two-thirds of articles that have been written can take information in the references that had purely been gleaned from an abstract, not from actually

looking at the data. And I think that that's very telling, you know, people look again for the headlines that suit their particular view. Yes. Yeah, I think. And there's so much we need to do to really unpick evidence whatever aspect of medicine or surgery that we're in. So we can really guide patients the best. We can and also share uncertainty is really key. And I mean, we mustn't forget that what we are doing is we are giving an opinion. Yes. We are not saying you have got to do something. And of course, doing nothing is always an option. Yeah. I think that's something that I've learned very early on actually that doing nothing is fine as well. Because you're not doing nothing, you're talking things through and that's really

important as well. But you're also empowering people because you are giving them information and saying these are your options, think about them and let us know what you want to do. Yeah, absolutely. So thank you ever so much, Steve, for coming out. It's been really informative and thank you for Jan behind the scenes to allow us to talk about her. I must add that we have had her permission to talk about her in such an open way. So before we go, I know you've done your homework actually, so I don't even need to ask you for your three take-home tips. Do you want to fire me with them? Okay, well, I mean, the first thing is when you are meeting a healthcare professional

and they're advising some treatment for you, you really need to know what all of the benefits, and especially the downsides of treatments or trials that they're recommending are, it's absolutely key that you understand all of the pros and cons. When you're in a situation where you are talking about cancer, answer, you need to ask them very explicitly about the pure cancer survival rates once the death rates from other causes have been removed from the data that they put in front of you. Because you certainly don't want, as we've got with the 28 days after proving positive for

COVID-19 rates, you don't really know how many of those people died of COVID and how many people died from something else. So you need to have the pure survival rates for the disease that you're talking about. And I think if you are in a situation whereby you are having side effects following treatment for breast cancer, you need to be able to discuss the evidence of the pros and cons of HRT for your particular type of cancer, how it's going to affect your daily life and well-being and what the benefits may be upon bone health and reduction in risk of heart disease and perhaps most importantly how would HRT influence my pure cancer survival rate? I think that that's absolutely key. And a final comment, it's not a piece of advice,

but a final comment would be, you know, your appreciation of the balance between length of life, longevity and quality of life changes as you get older. Quality of life becomes more important and therefore things which could potentially have a downside on your length of life shouldn't just be dismissed. So I think keep an open mind, things do change and be prepared to consider things that are pertinent to you. Very, very wise words from a very wise man. So thank you ever so much, Steve.

your time today. My pleasure. For more information about the perimenopause and menopause, please visit my website, balance hyphen menopause.com, or you can download the free balance app, which is available to download from the App Store or from Google Play.