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With one in two of us receiving a cancer diagnosis at some point during our lives, it has never been more important to improve the outcomes for people affected by cancer.
This cancer research podcast is brought to you by The University of Manchester in partnership with the Manchester Cancer Research Centre (MCRC). In each episode, our cancer researchers discuss the innovations, discoveries and projects that are changing the landscape of early detection.
Hello. You are listening to One in Two a Manchester Cancer Research podcast brought to you by the University of Manchester and the Manchester Cancer Research Centre.
With one in two of us receiving cancer diagnosis at some point in our lifetime, it has never been more important for our research to improve the outcomes for people affected by cancer. I'm your host Sally Best, and throughout this series I'll be speaking with Manchester Cancer researchers about their innovations, discoveries and projects that are changing the landscape of cancer detection and treatment.
In this episode, we speak to Professor Matt Everson and patient Sally Hayton. A never smoker with ALK positive lung cancer. We focus on overcoming the barriers to early detection in symptomatic lung cancer patients, specifically never smokers spotlighting the Manchester self-referral chest X-ray service. We also hear Sally�s cancer stories, her experiences and the barriers she faced in receiving her diagnosis.
Sally Best
Hello, everybody. Welcome to another episode. It's actually our final episode of season two of one in two, which is really sad, but we've maybe saved the best until last. So season two obviously focussed on lung cancer and we've gone through quite a journey with it. This episode I'm really excited about because we've got the wonderful Matt Everson and also a patient, and I think patients are so important and kind of tying everything together really, and understanding where this kind of research that we've spoken about is, you know, it can sometimes seem quite nebulous. And then we have the patient here and understanding the end the end goal, really.
So yeah. We've got another Sally as well actually, guys. So don�t get confused because it's Sally and Sally, but we'll do Sally B and Sally H maybe if we need to do direct stuff.
But today we're going to be focusing on overcoming barriers to symptomatic lung cancer diagnosis and focusing on never smokers. So I'm just going to come to Matt first, just so you give us a bit of kind of what's the word significance? Context is the word as to kind of why we're here today. So I'm wondering if you could introduce yourself, who you are, what you do.
And by the way, everybody, Matt's on call today. So if we lose him, that is why.
Matt Everson
So I'm a lung specialist, and, and my area of work is in lung cancer. So in the hospital setting, I see patients where there's a suspicion of lung cancer and oversee the diagnostic tests around that. And I'm the associate medical director for the Cancer Alliance. And I've had leadership roles in looking at innovations in lung cancer across the region over the last five or six years.
Sally Best
Amazing. And you went to uni here?
Matt Everson
Yes.
Sally Best
What did you do? What did you do? What did you study?
Matt Everson
Medicine.
Sally Best
Look at you go look. You might have been taught by my dad. Amazing. Well, you've got a lot on your plate there. And what you're saying is, so you, you work on kind of a lung care pathway board throughout the Greater Manchester area. Yeah. Amazing. And then Sally coming to you, I just wonder if you could introduce yourself and kind of give us a bit of information as to who you are and why you're here.
Sally Hayton
Yes, my name is Sally. I used to work as an occupational therapist and then worked in personnel in the NHS and then went back to working as an occupational therapist in the NHS and in social care and I never, ever thought that I would be advocating for never smoker lung cancer because it never crossed my mind that I would get that. And, and I think I've started to have a case in really because my consultant initially started to get me to tell my story to and all junior doctors and medical students, they were in her clinic and so yeah, that's where it all began. Also Greater Manchester cancer has patient voices and involves patients in decisions that are being made in relation to lung cancer and ask patients to comment on that. So I've become involved in this small lung community for Greater Manchester Cancer.
Sally Best
Amazing. Well, it's great to have a patient, as I've said previously, advocating for this, and we've done kind of previous episodes on never smokers, but we've never had that patient voice and it's something I'm striving for to have that representative. So thank you from the bottom of my heart, on the bottom of everybody's heart for taking the time, because I know it's not an easy thing to communicate and a dialogue to have. And it kind of must bring up a lot of things from previously that you're having to talk about. But, you know, showing strength in this area is so formidable of you. So you have my kind of sincere thanks.
Sally Hayton
Happy To raise awareness.
Sally Best
Amazing. And I'm just wondering, you know, it'd be great to hear from you about your kind of diagnosis. So I'm wondering if you could be able to tell us about, like when you were diagnosed with lung cancer and what type of lung cancer you have.
Sally Hayton
So I was diagnosed with stage four lung cancer in November 2013. And I've got is adenocarcinoma, a non-small cell lung cancer, adenocarcinoma. And I was tested for a mutation. And I've got this mutation called the ALK mutation, which is ALK, yeah, mutation. And I've only smoked less than less than ten cigarettes in my life when I was about 16 or 17. Yeah. And I think my understanding is that if you smoked less than 100 cigarettes, you're classed as a never smoker.
Sally Best
Yeah, quite a scary kind of thing to have faced I guess. And that ALK positive that you mentioned. We actually recorded with Fabia Gomez early on in the series on ALK positive lung cancer. So for anybody that wants to have a bit more of an insight into the kind of the science behind that, I'd say that would definitely be a good episode to look back on. And I'm just going to come to you, Matt, and ask if you could explain kind of the incidence of lung cancer as a whole and then this kind of percentile of lung cancers and never smokers, because I think again, for a lot of people, lung cancer and never smokers is quite a kind of enigma. So I'm just wondering if you've got any stats.
Matt Everson
yeah, lung cancers, a horrible, horrible disease. it is the commonest cause of cancer death across the world. So sadly, around 2 million people die from lung cancer across the world every year. So it's a major, major, health problem and challenge. In the UK. There's about 40,000 people that are diagnosed with lung cancer every year about 35,000 die every year from lung cancer, and approximately 6000 are in people that have never smoked. And that is completely correct. That definition we use, if you've smoked less than 100 cigarettes in your life, then you'd be classified as being a lifelong never smoker. So if you just look at it on its own, it would make it the eighth commonest cancer death.
Sally Best
Yeah. Across the country. So if that was considered as a kind of cancer on its own, yeah, it's crazy. And yeah. Seldom kind of talked about as well so it's.
Matt Everson
Why it's such an important topic.
Sally Best
So in terms of never smokers, what would be some of the symptoms that a never smoker with lung cancer might present with.
Matt Everson
So this is a massive challenge. in that there are certain symptoms and not just restricted to lung cancer, but certain symptoms that are red flags and very well-known red flags. So for me, from a lung perspective, if somebody coughs up blood, I think that's probably a relatively well, well understood that that should be looked at. And if that happens to someone quite frequently, they will seek, you know, they would go and see their GP or they would get that checked out. But actually that only happens in a very small proportion of people who have lung cancer. And the other the other symptoms are exceptionally common. So a cough, a cough is probably responsible I think for about 10% of all general practice sensations. So that volume is huge, absolutely huge. and actually lung cancer is a very, very rare cause of cough. So there's this the challenge of why I think what we will discuss is how do you ,from we all will suffer from a cough at some point we'll all get those symptoms. How do we investigate appropriately and diagnose appropriately at the earliest opportunity? So cough, breathlessness, pain, any way around the chest. And that includes, we've got to think about language when we say pain in the chest medically we may know what we think by that. But actually to somebody else that could just mean your chest is at the front.
Sally Best
Yeah.
Matt Everson
Now we could be talking about shoulder pain, back pain anywhere across the upper part, the torso. Yeah. So pain, breathlessness and cough. They're the kind of key common symptoms. I guess the centred around the chest. But equally there can be much more general symptoms. So you could lose weight, you could go off your food, you could feel rundown and tired. and really lung cancer can present in any way.
So it's a difficult diagnosis.
Sally Best
Yeah, completely.
Matt Everson
And that's, that's one of the reasons why suddenly it can present very late and sometimes it hasn't no symptoms.
Sally Best
Yeah. And I think it must be hard as well for patients to advocate for themselves because with such an array of symptoms, you kind of think, well this is, you know, this could be anything. Yeah, I mean, yeah, I, you know, type A person may experience fatigue and being run down on a cough and I don't know, but it might be easy to just kind of put it down to like, I've got seasonal flu or something, and I just keep on catching things over and over again so that, you know, consistent coughing, I think as well. You've spoken with was it on the GM podcast with Steve Bland about the message that, you know, you've got a cough, a three weeks, you go to your GP, Absolutely non-negotiable. That is just what you do and don't ever feel like you're kind of, you know, misusing the health service because that is the guidelines, right?
Matt Everson
Yeah.
Sally Best
Okay. Interesting. And then coming to you, Sally, I'm wondering if you could just give an overview of your journey from diagnosis to the treatment that you're receiving now, and also maybe just mentioning some of the symptoms that you are experiencing and are experiencing now. Just kind of raise awareness to the sort of things that you were looking out for.
Sally Hayton
So explaining how I was diagnosed, right? So I started with a cough and I went to my GP and within two weeks of starting the cough, I think I had it for about three weeks and went to my GP and he gave me some antibiotics and he said if your cough hasn't gone, come back in two weeks since my cough still hadn't gone. So I went back two weeks later and he gave me some different antibiotics and, and again said if you cough hasn't come, please come back in two weeks. So I went back two weeks later and he ordered a chest X-ray and, and then he phoned me and said I'm referring you under the two week rule to a lung cancer clinic, because something's showing up on your chest x ray. And at this time I was living just outside of Greater Manchester. And so I went to the lung cancer clinic, went through numerous tests on the day, and I thought, why am I going to a lung cancer clinic? You know, I've never smoked. And my parents didn't smoke. I've never lived with anybody who smoked. And yeah, so I, I couldn't really understand why I was going to a lung cancer clinic, but I thought, well, this is what my GP told me to do. I very rarely go to the doctor, so I will go to the lung cancer clinic. So on the day I went through numerous tests and then having gone through these different tests, I saw the consultant, respiratory and physician who said to me that I was an inappropriate referral so he wouldn't refer me direct for a CT scan now because, well, more urgent people coming through. But I would get a CT scan appointment in the future.
Sally Best
I'm sorry to hear that the inappropriate referral was down to the fact that you were a never smoker.
Sally Hayton
well, I think so, yeah.. He thought what I've got was a virus and he thought I had a virus and he said it can take up to 12 months for a cough to go.
Sally Best
Okay.
Sally Hayton
So I then went back and had the CT scan and numerous weeks later when the appointment came through and that showed that I'd got right middle lobe collapse and I had a letter from him to say that I had got right middle lobe collapse. The right middle lobe collapse was common in people in the late forties living in that area and, and he did say that they could do a bronchoscopy if I wanted it, but he didn't think that was appropriate. So and so I never saw him. I just got this letter. And so I went back to the GP and it did actually discuss with the GP and said, Do you think I need a bronchoscopy? And he said, Well, there's a lot of risks and you know, if they're saying you've got, you know, they don't feel you need it, I wouldn't do it. So and, and I, you know, not, nobody thought I needed it so I didn't have it. And then I went back to the GP because a cough was continuing and I was treated for acid reflux on two or three occasions and give him medication for that. Then I was treated for an asthma and given an inhaler. I mean, I wasn't breathless, I was coughing. I don't know whether asthma presents with coughing, but I wasn't definitely wasn't breathless and, and then I got really bad rib pain and the GP referred me and for chest x ray and that came back and it was reported as normal. So I assumed from that totally naively, that my right middle lobe would reinflate it for some reason and that my chest x ray was now normal because it hadn't been normal. When I first had it then I got shoulder pain and I was told I got a frozen shoulder and I went to physio and was given exercises for a frozen shoulder. And then I was treated with the hydro dilation technique for a frozen shoulder. And when I was having that, the radiologist said to me, we could, we, you know, we could, we need to do an x ray really. And I said, well I've just had one. Yeah, yeah. And it's come back as normal. And so now anybody says something is normal, I'm, you know, I'm ready to question. I never thought at the time, I just assumed what I was being told was right. And so then my shoulder, you know, resolved after that treatment and then probably about six weeks later, and I started to lose a sight in my right eye. And one evening I thought, this seems different. And we've got some friends rounds for a meal. And I couldn't see my partner's friend properly at the bottom of the table. It just felt different. Went to work the next day and didn't really think too much of it. And then on the way home from work I realised it was getting worse and called in an optician and they were just closing. Well, I went to explain what was happening. They said, Why didn�t you come sooner? Well I�ve been working I said. So they looked at it and they thought that I got detached retina or they said I could have something more sinister.
Sally Best
Okay.
Sally Hayton
And so I asked if I could go. They said they could refer me to Rochdale or they could refer me to. And because now I was in Greater Manchester. Yeah. For this appointment. And I said, I think I prefer to go to Manchester eye Hospital. So they referred me to Manchester eye hospital and I went there that evening and by 9:30 at night I got a consultant holding my hand saying, I think you've got a tumour behind your eye. Can you come back and see the retinal specialist tomorrow? So when the consultant started holding my hand and having seen numerous doctors between sort of half six and half nine, I thought something's, something's going on here. And so then I was referred the following day to the ocular oncology people in Liverpool. And so as the Tuesday that I went to the eye hospital, the Wednesday I saw the eye consultant. Then the following Monday I was seeing this professor in oncology at Liverpool and he said he thought it was a tumour and I, I sort of pushed him. And said do you think it's a primary tumour or a secondary tumour. He didn't want to say but when I really pushed him he said well if you really pushing me I will say I think it's a secondary tumour. So they did a biopsy on my eye the next day and when the results of that came through it showed that the primary was in my lung cancer.
Matt Everson
So Sally how long was the time from your cough starting?
Sally Hayton
11 months. So it was December 2012 that started with the cough and it was the 5th of November that I was at Manchester eye Hospital. Yeah. Yeah. So it was a few weeks after that that I got the biopsy results back.
Sally Best
I mean, it's. Yeah, it's quite a kind of treacherous tale and very difficult, I can imagine with repeated advice and, and different kind of scenarios and things. And was there any point at the start of that journey that you thought, you know, this could be lung cancer or did you just completely negate the fact that it could have been because you thought, you know, I've never smoked, I can't get lung cancer.
Sally Hayton
I never thought it was lung cancer. I never thought it was lung cancer at all? My partner said to me, you know, you can�t have lung cancer. A couple of people I knew said you won�t have lung cancer. Yeah. I never thought I got lung cancer yet. So I didn't. It just never, ever crossed my mind.
Sally Best
Yeah, it's crazy. And I mean Matt coming to you would you class that as a kind of a late diagnosis of, of lung cancer in a patient.
Matt Everson
Well yeah, there was. So there were clearly opportunities for an earlier diagnosis. It's a very harrowing story.
Sally Best
Yeah.
Matt Everson
For members of the public to hear that you know, those symptoms that we, everybody could relate to, a cough just won't go away. The thought my God, that could be lung cancer.
Sally Best
Yeah.
Matt Everson
From a health care professional. And that's even from a respiratory specialist. I think, you know, I see this all the time, see cough, you know, and I don't think this is lung cancer. And then fine, actually, this is lung cancer. So it's really harrowing. I think, on both sides. and it's the huge challenges. So 999 times out of a thousand, those symptoms like that will not be because of lung cancer, but one time they will be. And how do you make sure how do you do everything possible to not have 11 months of delay, you know, symptoms and to find that one? That's what we've got to try and address.
Sally Hayton
Yeah, I think I feel let down because I work for the NHS and social care. Yeah. I just automatically assumed that a consultant respiratory physician would know what he was talking about. So I totally took on board what he said. If I know what I know now, yeah, it will be quite different. And I know another consultant has actually said to me the only mistake you made was listening to a consultant. I must say, having said that, I haven't heard similar stories to myself where people have got to see a consultant respiratory physician. And have been misdiagnosed and people I've seen people have delays at the GP. And people not going to the GP. Yeah that so I think I do think my situation is a bit different and I'm, I hope it's a bit different. And yeah, I mean and I don't want to just put it down to the consultant respiratory physician because the chest radiologist had written benign. Yeah. And the clinical director of radiology had written needs bronchoscopy and the chest radiologist who was a consultant and put a line through that and just put benign. So I think I've just been really unfortunate. Yeah. There's, you know there is a human error. Yeah, but we didn't know anything. And when it's within the health service it's obviously impacts on people's lives. Yeah.
Sally Best
And I think there's an educational piece there as well to understand, you know, it's not just at the public level of you advocating for yourself and understanding that you only need lungs to get lung cancer. It's changing the mindset of people on the pathway as well. And I know you do work in that, so the, you know, consultants, clinicians can understand the referral routes for patients aren't so clean cut. If you don't fulfil one criteria, you get put on a completely different path.
Sally Hayton
Yeah, I think if I had, if I'd smoked, yeah, I would have got diagnosed earlier.
Sally Best
Which is really, really sad. and I'm sorry.
Sally Hayton
Yeah. Because there wasn't a red flag for never smokers. There was the red flag for smokers. Yeah.
Matt Everson
There's been some evidence published in the last 12 to 18 months or so that specifically looked at some of the, the barriers. If you've never smoked to the diagnosis of lung cancer and that is a very clear theme that, it's easier to be reassured that there's an alternative explanation for those symptoms and for, for vigilance to drop. If you've never smoked and that's being reassured by health care professionals more easily reassured by health care professionals, more easily reassured that those symptoms must be something else.
Sally Best
So I mean Matt you're kind of pioneering this, this diagnosis of lung cancer, an earlier stage in the symptomatic lung cancer with a focus on never smokers. Could you tell me a bit of an overview about the pilot that you've been running in self-referral chest x rays, because I know this kind of links into that more of a holistic approach in the early diagnosis piece.
Matt Everson
Yeah. so I guess it begins with the story about chest x rays because chest x rays have been around for a very long time. They get a bit of a bad name about their ability to diagnose things. There are some limitations, but equally there are some, some real advantages. So chest x rays are very, very accessible. They're very quick to do and we have resources within the health care system to deliver them really a much bigger scale than we do. and, and as I say, the big challenge is that there are many, many, many people who have the common symptoms of lung cancer for which the vast majority do not have lung cancer. So I guess one way to think about it is if there were a thousand people that have a cough or breathlessness or pain in their chest for three weeks or more, then ten of them maybe will have lung cancer. And a chest x ray will pick out eight of them. It will miss two. And that's a really key message that a normal chest x ray doesn't fully exclude lung cancer, but it's equally very reassuring because then the 990 normal chest x rays, all that show something else, are truly normal. So it is a, it's a test that's there and accessible and we could really utilise that to its maximum potential.
for, for the people that have these common symptoms and there will be that small number where actually the x rays abnormal, it needs further work, but there's a lot of people that where you could think actually that's quite reassuring and I might not do anything else unless the symptoms don't go away. I might have a little period of trying a treatment for something or always knowing that a normal x ray doesn't fully exclude lung cancer, though it is reassuring You kind of you take every individual case on its merit and you've got to have that awareness. So I think chest x rays are an important part of earlier diagnosis. When you have symptoms, it could be lung cancer. It's about getting that chest x ray. And there's lots of ways to do that. You've mentioned education already and that's on both for members of the public education for health care professionals, it's education. But I think one of the it's really clear and I guess really tragic that there are real barriers to accessing something like a chest x ray or accessing the health care system for someone who has those symptoms. that can be if you do smoke or you have smoked, you could feel that if you go to a doctor with a cough, then there could be a judgement of that. Yeah. if you haven't smoked, you could feel why you know, Why would I go with a cough? It's just a cough or I've had a cough before and it went away.
Why am I, why would I do something this time? Or I've been with a cough and they just told me it would go away. I just get told the same thing and it's some of the most tragic things we've kind of found in some of our insight work is the fear of, it's almost that that person isn't worthy of being seen and these symptoms aren't worthy. We get that the public get flooded by this messaging that the NHS is overrun. And so why would I go with this? I'm just coughing saying so there's lots and lots of barriers that could prevent somebody going to seek help. we know that, a person with, with a set of symptoms could go and see one health care professional and have a chest X-ray. They could go and see another health care professional and they wouldn't. That's kind then that's kind of human behaviour and assessment of symptoms. So there's some variation in access. So in that context, if somebody was concerned about their symptoms and in the right context. So if someone, we keep saying this message, if you've coughed for three weeks or more, it needs investigating, your breathing has changed for three weeks or more. Pain three weeks or more. Yeah. Needs investigating and generally that's over the age of 40. That's the kind of guidance we have nationally. Then you should have a chest X-ray. And if that person was able to just go and have one. Without going to see their GP necessarily, then the data we have suggests that there will definitely be a population of people that will have an X-ray that wouldn't otherwise. There�s still people who want to go and see their GP, want to talk those things through and that that's right there, there's not one or the other, but by providing an alternative route then the total number of people that should have an X-ray should go up. Yeah, that's the theory. so we've been running this in a few areas across Greater Manchester, and it's has very much played out like that. There's been very, very good uptake, so very high numbers, particularly when you compare it to other things that have been tried to try and increase the rate of X-rays. So there's been a very, very good attendance. you know, we're now into the thousands of people that have been x rays. Which is a real positive and they are people that need a chest X-ray. We know that because of the symptoms they've reported. They are in line with the guidance that we have, the people that should have an x ray and like we know 95% of them have a normal X-ray and they get a letter back, as does the GP, to say you've been for an X-ray. This is normal. That's very reassuring. But if there are some worrying symptoms, persistent symptoms and x rays and everything, you have to get those things checked out. And then in in 5%, the chest x rays isn't normal. So 3%. There's something else. There's another reason. And that x ray gets looked at by a chest specialist. And so sometimes that's just a case of, there's a chest problem that needs seeing in a chest clinic. It's not cancer, but it almost takes out some of those. That's not me that just straight into where you need to be. and in 2%, there's a suspicion of lung cancer, and it ultimately works out about, about half a percent. Just over half a percent have lung cancer.
Sally Best
so I'm just going to interject with a couple of questions here, because you've mentioned the kind of the criteria that people are adhering to, to be able to go for this chest x ray what are some of those criteria? is smoking within the criteria?
Matt Everson
No.
Sally Best
Okay. So that's great, first of all.
Matt Everson
Exactly. Yeah. And that is and that's a huge and it's got to be accompanied by this the education. So if you have lungs, you can get lung cancer, the chances are exceptionally small. They really are well, important. But as we said before, that one in a thousand is that that one, there must be the processes and systems in place so that one person gets access, gets a diagnosis quickly, as quick as can be, which will in turn give the very best chance of, of the best outcomes possible. so it's all symptom based. There is again, national guidance is about age, it's over 40 and then it's about symptoms. So three weeks or more cough, breathlessness, pain in the chest, back shoulders, fatigue, weight loss, loss of appetite. Those symptoms
Sally Best
and the my, my other question was, how are these scans interpreted? Because you're obviously going to receive you know, you've said that you've got thousands of patients that are being recruited and you're hopefully going to see that increase in. People are coming for chest X-rays. All I can think is who is going to be reading all of these and how are you dealing with the kind of sheer capacity of that?
Matt Everson
Yeah, it's a good question. And radiology in general is, it is in a crisis, the NHS. So, that's a consideration in, in any part of health care right now. I go back to say that chest x rays are quick and also quick to look at and reports much more so than other invasive other more detailed scans. Equally, when COVID hits, chest x rays dropped off completely. And it was there's been a horrible aftermath of COVID and lung cancer because everything we've just said, get a cough, get it checked early, early.
Sally Best
Get it away from everybody. Yeah, stay away
Matt Everson
Don't do anything. Stay at home. Yeah. And we have seen later presentation of lung cancer. and chest x rays just went and we're not back to where we were before. And, and that's got to be a key priority for us. so whenever you, whenever you pilot new services, you put mechanisms in place to ensure robust reporting, things like that. So within this programme there's a dedicated reporting resource. as part of the programme. And so the results are very fast and so someone can get reassurance very quickly. The vast majority of people can be reassured. It's very likely it saves GP appointments as well.
we know that could be in different ways. So someone may go and see their GP having had an X-ray. So that first appointment the GP has a benefit of you've got an x ray, I know what they expect. Sure, I'd have to send you for one and bring you back. We can make a decision now. What we do or having that x ray and reassurance and, and being reassured by that. As long as those people are appropriately safety netted. So just because you're x rays normal, you know, asthma doesn't show up on an x ray. If you've got symptoms that are worrying, they're not getting better. It has to be checked out, has to be. but you know, like I say 999 of the thousand, that cough will just go away. It will be viral. It will it be something just as we were just talking about? It will be and it will go away. But you've had the appropriate test to provide reassurance.
Sally Best
Yeah.
Matt Everson
And you select out those or you've to go and look into it further.
Sally Best
And within this pilot, was there any AI that was integrated in terms of stratifying kind of patient scans?
Matt Everson
So, there's a lot of interest in, in AI and chest x rays, particularly at the moment. So there's a lot of evaluation for it, and NICE, the national body has evaluated AI and chest x rays quite recently and is very much more work is needed to understand its role. So there is there's work going on in Greater Manchester and that's to try and understand does it improve diagnosis? We can miss things on an x ray, the human eye can miss things on an x ray. So if you have a human eye and a computer working together, does it improve diagnosis? And equally one we think one of the big things maybe that if you, if you do have thousands of X rays, how do you pick out those for you immediately and say that one's abnormal. So that person's got to get into a CT scan very quickly and AI might have a role in doing that. so it's all under, all under evaluation.
Sally Best
Yeah. Something to look forward to and hopefully and in terms of the sorry, just on the, the self-referral chest x ray, so what are the results looking like so far? Like have you seen, you've said that you've seen that stage shift and people being diagnosed early. Have you had any kind of feedback about people who, you know, have used the service or anything like that?
Matt Everson
Yes. okay. So stage shift will probably have to be a little careful in terminology, so.
Sally Best
Okay.
Matt Everson
lung cancer split into stages, stage one through to stage four. if wherever possible, if we can diagnose stage one lung cancer, if it's there and you can find it at stage one, the treatments are very, very good and have very good long term outcomes. They it's quite rare to have symptoms at stage one lung cancer.
Sally Best
Yeah.
Matt Everson
You don't have nerves in your lungs and you can't feel your lungs, you can't know something's there. and the real way to catch early stage lung cancer is through screening. So someone has no symptoms, but you find an at risk population and do a test that can pick it out. And that's a real stage shift because normally about half of all patients with lung cancer present at an advanced stage, whereas in lung cancer screening, about 80% found at stage one. So it's a huge stage shift. We're talking about symptomatic diagnosis.
Sally Best
Yes.
Matt Everson
And, it's very difficult to know whether that would cause a stage shift. But what it's very likely to do is cause it is lead to an earlier diagnosis, right? And that makes, it makes a massive difference. days can matter with lung cancer and somebody's health can deteriorate very quickly. And if someone's health is deteriorating, that then affects your ability to make a diagnosis or, be well enough to have a biopsy, which can mean you can't personalise someone's tumour and understand what the best treatments are.
Their health might not be sufficient enough for treatment. So an earlier diagnosis when someone has symptoms undoubtedly will mean, that there's a, there's an opportunity for better outcomes because we're finding it earlier when someone's fitter, whether it will cause a stage shift, I don't know.
Sally Best
Okay.
Matt Everson
But it's, there's been so much focus on lung cancer screening and rightly because it's, it's going to be, it will make huge, huge differences. But about one in four, one in five people with lung cancer will be found through screening, that's four in five, three and four. Four and five won't. And we know there are real delays in those in those path.
And it's that very first from the first symptoms I think everyone's in the lung cancer community is quite united that that's the that's the part that's the part where we still we've got so much improvements to make. And the self-referral actually is just one component of a bigger strategy. Yeah, but it does seem the biggest thing for me is that it brings people in that need an x ray. It overcomes those barriers and the actual prevalence of lung cancer within that cohort is really small as it is for all chest x rays. So we have to deliver this a really big scale to see to to really start to see benefits. So so far our day, our work has been demonstrating that it overcomes the barriers to attending and getting a chest x ray, which it really appears to do. And now it's about how do we expand and try and make sure it's available for as many people as possible.
Sally Best
So some of the people that are attending, would they have you know, have you got any reports that they wouldn't have attended the GP?
Matt Everson
Yeah, of everything. I think it's everything in there. We can show that there are some people that came for that x ray that have never contacted their GP and never would have, some that have contacted the GP and an X ray wasn't part of the outcome. so we're kind of all those barriers we talked about. It appears to overcome them all. And so for some people it provides that alternative route to where we need to get to while still maintaining everything else we've got and the education on both sides. you know how important it is to go and see if you've got that cough for three weeks or more, that is still a really important message. We�re not saying that self-referral is the only route. It's not. just for some it might be.
Sally Best
Yeah. And I mean Sally, you've, you know been at this stage of diagnosis and I know you also work on kind of patient representative groups and communicating with them and understanding what's best for other never smokers. Would you and your cohort, you know, speaking on behalf of them, if you're comfortable to do you think some people would find this incentive helpful? And like, would it have been something that you were interested in in that stage of your diagnosis?
Sally Hayton
I think when I was when I was diagnosed, I was totally unaware that never smokers could get lung cancer.
Sally Best
Yeah.
Sally Hayton
So it wouldn't have been something that I really would have gone to. Yeah. Yeah. I mean, if I know now ten years down the line and what I know now, I would have definitely come to me because I'm, you know, I'm concerned, you know, I'm concerned like anybody about your health. I think the screening for any sort of cancers important and if I'd known that never smokers could get lung cancer, I would have I would definitely have gone and wanted it. And even if I'd continued to cough like, you know, even my situation, I'd have kept going back and saying, could I have never smoker lung cancer? Yeah, but I, I didn't know about it at all. And, and the thing that's interesting is when I'm a member of the ALK positive UK group and the World Wide ALK positive group, and within that there's like consultants without positive lung cancer, there's GP's, there's nurses, there's physios, there's OT�s, there's technical technicians and they didn't know about never smoker lung cancer. So I would imagine that a lot of people who haven't smoked wouldn't think that they're going to get it. So I did ask actually on the pages and said did you, did you know that never smokers can get lung cancer and there was this was on both the world wide site and the UK one and the there was over 80% of people said no and the ones who said yes related it to asbestos or radon or working in some sort of hazardous work environment. And one person said that although they knew about different causes of you know, never smoker lung cancer, they didn't realise that there could be an unknown cause for it, which I thought was quite interesting.
Sally Best
Yeah. So what I'm hearing there is that you kind of think this incentive would be absolutely, you know, buy off the hand for taking up with the self-referral of chest x rays. But there needs to be public awareness campaign to the fact, speaking to the fact you only need lungs to get lung cancer. And I mean.
Sally Hayton
I think unless people are aware that never smokers can get lung cancer you wouldn't really get them. So I mean I might be wrong. I don't know. Other people who've never smoked have been picked up via the current scheme or not. Have they?
Matt Everson
Yeah. And it's quite there's, there's such a big education piece, for, for everybody and that's about, you know, the saying we always have to appreciate that tobacco smoke is the leading risk factor for lung cancer that, you know, the single greatest thing that anybody can do if they smoke is, is to stop for their health. It's incredibly challenging, but there's loads of effective treatments out there to do that. And if they have symptoms like what we've talked about, cough, breathlessness, chest back, pain, three weeks or more, it has to be investigated. But at the same time, you know, if you have lungs, you can get lung cancer. The chances are incredibly small. They really are. But it's there. And there has to be a vigilance for symptoms that that aren't going away. Exactly the same rules that that three weeks rule needs an x ray, even if that x-ray is normal. There's got to be that vigilance that if things just aren't right not explains not getting better. It absolutely needs investigating further to find that one.
Sally Hayton
I think the profile of lung cancer is changing with it. So I sort of saw it as people who smoked, you know, a package of cigarettes a day for 20, 30 years. And then they got to the seventies and eighties and then they were diagnosed with stage four lung cancer. That was my sort of perception in my head then now, having been diagnosed with it with lung cancer and not fitting that group, I realised that like never smokers are a totally different group of people. And you know, I know somebody who was 17 when she was diagnosed and then went on to do a nurse training after she'd been diagnosed. And, you know, I know people in their twenties who've been diagnosed and people in their thirties, people who've been pregnant when the diagnosed, you know, people with very young children. And so there's people from that, the profile is changing. So it's actually getting that shift, I think, in health care professionals and the general public's read that any age, you know, Yeah, I mean seventeen's the youngest person that I've met. But yeah, so yeah, I don't work in that field, but just from the support group I'm in and yeah, you know, it's, it's covering a lot wider age range so.
Sally Best
And yeah, that's the thing I think and you had having the archetypal type-A smoker, I mean it's the what I grew up with and I think a lot of people did and it's not only I think what you've said there is correct, it's a two tiered approach. It's not one or the other. It's both health care professionals and the general public. The general public need to be endorsed and educated and the health care professionals need to be aware of this kind of profile of person that is eligible for these treatments. Because, I mean, it's you know, it's happened in the past kind of however many years. And it's yeah. So important for your group to be represented because like Matt said, if it was on its own, it would be classed as like the eighth most prevalent or.
Matt Everson
So the 8th commonest cause of cancer.
Sally Best
Okay. So you know, having the understanding that it's that change of mindset is so important.
Sally Hayton
And people regularly post when they join the group and you get people who are like marathon runners and you know people who cycle you know, I don't know, a hundred mile long distances each week. People who do triathlons runs and there's people who've worked in cancer research who have no idea that it exists. But and then within me, obviously within the field of people working within that field, there's lots of developments going on. The treatments are changing. And and, you know, for me, at stage four, the treatments just changed as I was diagnosed, which was great. And I was given ten months to live. And because I've responded well to treatment, I'm still here. But now the stream is coming through because of genomics and genomic testing and biomarkers and yeah, there's treatments coming through for people at stage one, two, three who have never smoked lung cancer.
Sally Best
So yeah, it's great to her. And for those who haven't listened, definitely listen to the ALK positive episode with Fabio because it that kind of nods to some of those things that you've just talked about. So, I mean, coming to you Matt, what would be your hope for the diagnosis of kind of symptomatic lung cancer in not only Manchester, but kind of nationwide over the next ten years? Ten years is a good expanse to go by?
Matt Everson
Well I think the ambition is to never hear a story like that again.
Sally Best
Yeah.
Matt Everson
through a, you know, a multifaceted strategy that does try to drive up public awareness about non smoking lung cancer, about the need for investigation and, persistent symptoms, through healthcare education, through new ways of, of delivering healthcare. like self-referral, that's just one of them, you know, maybe numerous of the things that work. And as I say, the focus is really now shining on this area, lots of areas across the country doing some, some really innovative work. So we try and learn which of these things work the best and is going to help us achieve that goal. So like a would you see the self refer x-ray is kind of one of many things that are going on, but that's just in Greater Manchester at the minute.
Sally Best
Would you like to see that rolled nationwide?
Matt Everson
Yeah, and there are, there are other services. yeah, and, and some that have run before the greater Manchester one. but I do really think that so that's a key part of it. And I think our results really show the, it's the uptake, particularly against other ways of increasing X-rays that have been tried before. I think it's a really powerful vehicle. One of others but and that's, you know, the Cancer Alliance in Greater Manchester, that's what it's charged with. It's charged with innovating and, understanding what interventions work well and then trying to make them, business as usual.
Sally Best
Yeah. And if you had a policy request for to address some of the barriers to these incentives being introduced, it's quite a hard question. But do you have a policy request that you'd kind of like to see implemented?
Matt Everson
I think I think it already is. I think it has the attention and the appropriate level of focus. you know, going right back to where we started the conversation about the horror of lung cancer, and, and the fact it terrorises communities, it really does. and so it rightly has the focus and there�s so many things happening about screening, about better treatments. This is the unmet need is that making sure somebody with symptoms gets the appropriate care that they need and knows what that appropriate care is and where they're empowered to get that care. so I think it has the attention. it's, I guess my plea would prefer for it to, to address every aspect of it. Yeah. Not just one. And I think that's really important, particularly what Sally said. Yeah. That it's on every angle. We've got to create almost a new persona of lung cancer because we have, you know, wrongly what you, if you say lung cancer, perhaps we could be guilty of thinking of a male in the sixties or seventies that smoked for a long time, often from, the communities that face the biggest, financial challenges. But that's, it's not the case particularly and never smoking lung cancer, which is younger people perhaps more common in females. Yeah, for more affluent communities, we've got to understand that there are different faces to lung cancer and recognise that.
Sally Best
And do you think maybe government or public health campaigns like, you know, kind of TV ads and the kind of billboards and things would help assist with that?
Matt Everson
Yeah, there has to be, there has to be good, media campaigns that raise awareness, and I think it's, it's a really, I think it's a really difficult balancing act. You've got to we have to listen to people that have been through this, and listen to how can we best get those messages across. it's really important for somebody to know that anybody can get lung cancer. I'd never want it to feel that it's for, The risk of lung cancer is a very powerful motivator for somebody to stop smoking. And for that person to hear a message you can get. It doesn't matter whether you smoke or not. You can get lung cancer. I would never want that to be interpreted as a message that doesn't support everything that is being done to stop smoking. So you've got to it's just you've got to get the balance correct and listen to every community to understand how do you best deliver those messages. We have to stop as many people as possible from smoking, from ever, ever smoking. If they do, to help them to stop, we have to make sure everyone knows that you could get lung cancer. You could. And to be vigilant and to be persistent and be empowered to act on those symptoms. So you say it's a challenge. There's not one solution. No. but I do think the focus is on it rightly, you know.
Sally Best
Amazing. And I guess that's why you come in Sally and the advocacy and patient groups that you're working with and communicating the messages that you find out for would have found helpful for the cohort that you represent. And so empowering and really, really beneficial as well.
Sally Hayton
Yeah, Yeah. I can see that. I mean, obviously I can see that awareness needs to be raised about and have a smoke lung cancer. And I can see the problem with people who've smoked and not wanting stop them going for screening. So I can definitely understand that. And I wondered if you wanted to if you could have like a campaign with like, you know, 85% of people who get lung cancer have smoked and then have pictures of them and then pictures next to them with the 15, 20% who you know, like somebody said the other day, you know, I was 26. They never thought I'd got lung cancer. Yeah. So if you see if you had obviously the bigger percentages, people who've smoked and, they need to get the right treatment equally as never smokers. But there needs to be some awareness that the age range is so different and the things like the screening programme only seeing people over 40. How do younger people get picked up. yeah, I think yeah.
Sally Best
I mean, Ruth Strauss Foundation actually did something with Rankin, the photographer. I'll put it in the bio for everybody that's interested. It's these patients holding up I think it's their CT or their X-ray scans, and it just shows the plethora of difference of what your archetypal lung cancer patient and inverted commas would be. So I'll put that in because that's so interesting. But for that to be that message to be disseminated to a greater extent would be.
Sally Hayton
Yeah, I mean that was a really good campaign. Yeah, it's really well, Andrew Strauss is actually set up this charity to raise money for never smoke lung cancer and to promote and raise awareness about it and it would be good if that campaign could be spread wider. Yeah. And the EGFR, which is a new mutation which is a lot more common than the ALK. Yeah. That that group was also involved in that. Yeah. And I know some people actually. Yeah. On those photographs so.
Sally Best
Well it's good. You've got a nice community as well, of the forums as well that are enabling you to kind of speak to all these different people.
Sally Hayton
Yeah, I think that's sort of developed since I was diagnosed. Yeah. Is the like the World Wide Group came about and then they. The UK group. Yeah. So that yeah, it is good. and they do try to raise awareness.
Sally Best
Yeah. So nice. Well thank you both so much for speaking with me today. I'm just wondering if you have kind of a leaving message, Sally, that you'd just like to say on, you know, why you kind of came. Just thought leaving message because it's been absolutely fabulous to hear your story. And I think, like Matt said, it's completely harrowing, but I'm really appreciative that you have got the kind of strength to tell about story because it's so beneficial in this conversation and other conversations and including that patient voice. And you've been fabulous. So honestly, thank you so much. But yeah, it was just.
Sally Hayton
I think you only need lungs to get lung cancer. Yeah. Is a big one and on about the changing profile. You know the profile for never smokers is totally different than for smokers. And there's a lot of research going on and treatments and people are living a lot longer. You know, I know people with my time from countries like for 16 years and everyone who's still alive after 16 years, some people aren't as fortunate as I am and I am very fortunate and some people are obviously a lot less fortunate than I am. And so genomics is sort of moved things forward an awful lot for never smoker lung cancer. And and I think screening and health education is just so important.
Sally Best
Yeah. Amazing. Thank you. So yeah, we've heard about Sally's story. We've heard about the self-referral chest x ray and the hopes to integrate AI into that, we've heard about kind of public campaigns that would be beneficial. And finally, hopes for the future and a little bit of a policy request. So thank you so much, everybody, for listening. Thank you Matt so much. Absolute hero. And I know GM cancer are doing amazing work and it's great hear about it. And unfortunately, we don't have the time to cover it all. But we also have to pick your brains for one of them. Massive, massive thank you to Sally. I'll include all the links in the show notes, but yeah, for now, I guess it's good bye.
Sally Best
Following the recording of this podcast, Sally Hatim recorded an additional message that she wished to include to contextualise her positive experience since her diagnosis and her treatment at the Christie in Manchester.
Sally Hayton
I must say, my experience before diagnosis has been very different than my experience after my diagnosis. And since my diagnosis as an inpatient now at the Christie for over ten years. And I feel very fortunate to be treated there. I have had excellent treatment from my oncologist and all the stuff they hear, the clinical expertise in treating never smoker lung cancer. I feel very fortunate to have been diagnosed just as cutting edge treatments were coming through. All of the medications that I had been treated with have been through clinical trials at the Christie.
Sally Best
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