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Colin Stokes MBE on Founding One of the UK’s Leading Prostate Cancer Charities

Colin Stokes MBE is the indefatigable founder and honorary chairman of the Prostate Project, a charity established in 1998 and dedicated to improving the experience and outcomes for men with prostate cancer. Based at the University of Surrey and closely linked to the Royal Surrey Hospital, it has made a significant impact on both research and patient experience with prostate cancer. In this interview Colin emphasises the importance of localism and focus in the work of his charity, and demonstrates how this approach has helped to establish the Royal Surrey and the Stokes Centre for Urology as world-class centre of excellence in prostate cancer research and practice. 

https://www.prostate-project.org.uk/about.html

Please find below a written transcript of the interview.

Clare Delmar:
Hello and welcome to On Focus brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood and often ignored. Prostate cancer is now the most commonly diagnosed cancer in the UK, and with this somber fact comes a multitude of challenges and opportunities. I'm Clare Delmar. Joining me today for our first podcast of 2021 is Colin Stokes MBE, a former prostate cancer patient and founder of The Prostate Project. Established in 1998 with the aim of giving men a better chance of beating prostate cancer,  The Prostate Cancer Project has raised over 10 million pounds and helped the Royal Surrey County Hospital achieve Centre of Excellence status in the treatment of prostate cancer. It has provided equipment and specialist nursing staff to the Royal Surrey, St. Luke's Cancer Centre, and Frimley Park Hospital and runs an active patient support group in the Guildford area. Colin is here to talk with me about how charities like his play a vital role in research and patient support. Colin, welcome to On Focus and a very happy New Year to you.

Colin Stokes:
Well, Happy New Year to you. And it's great to be with you. And thank you very much for talking to me about The Prostate Project.

Clare Delmar:
Excellent, and well, I'm looking forward to it, so let's dive right in. And I think the best way to start is I've given a very brief summary, but perhaps you could open this discussion up by telling us about how you established The Prostate Project and what its mission has been and is currently.

Colin Stokes:
Yeah, well, in 1997, I was exceptionally lucky to have a minor lump on my face and very up to date and observant doctor, the GP I went to, decided that he would check my prostate and found that I had prostate cancer. I had no idea what it was. I'd hardly heard of it. I suppose I had. I never thought I would have it. He found it by a physical examination. And I then went on, as you did then, to see a consultant. And during the meetings with John Davies, he was very... We got along quite well and we talked about prostate cancer and he outlined the shortage of capital equipment for treatment and diagnosis in the Royal Surrey. And he had recently joined. And so we said, well, the simple contract was: you keep me alive, I'll raise you some money. I remember having that discussion. So he promised to do his bit and I said, well, in that case, I'll do that after about nine months.... It wasn't nine months, six months after I had the operation, because then the choices were pretty limited and I had open surgery removal. They cut you from belly button down to, straight down. And it was a major physical operation. So when we met, we said, hey, look, what's the issues? And he told me the issues in more detail about the fact that I had one ultrasound machine, very old one, of course, but it was good at the time.But it doesn't do today's does. And he explained that whenever... they'd only got one in the hospital, which meant whenever there were two of them doing clinics thay had to push the ultrasound between them, and all that sort of stuff. And so it was crystal clear that they needed some capital money support. So we said, let's get some friends together. Let's raise you some money. And he got five or six of his friends and I got five or six of my friends and The Prostate Project was born. And really, as you rightly said, it was right from day one about giving men a better chance of beating prostate cancer. So any decision that the trustees made was always with that absolutely firmly in their minds.

Clare Delmar:
OK, wow. So question I have is that 23 years ago, 1998 doesn't sound that long ago, although I suppose it was 1997 when you were diagnosed.

Colin Stokes:
23 years.

Clare Delmar:
23 years. So I mean a lot has happened since then. And what would you say are the biggest and most positive developments since then for men?

Colin Stokes:
Probably if I look back and think a) what I had to go through in order to be properly diagnosed. Now first of all, you had very poor ultrasound. They had a PSA test which gave them some information. They took blood, obviously, and then they had to do a biopsy. And you did a biopsy without any anaesthetic.

Clare Delmar:
Really?

Colin Stokes:
Yeah. On a Saturday morning, I remember going to see John and having this put up my backside and having the biopsies taken. Now, that was a pretty unpleasant experience.

Clare Delmar:
Absolutely.

Colin Stokes:
...and probably had a lot of danger about it I suspect in retrospect. But you couldn't think of it then, and I suppose these days the huge advantage of accurate and more effective diagnosis, the dropping of the use of a biopsy as a diagnosis tool, largely, it is used, but it's not the first thing that happens. It's the last thing if they want to know exactly where the cancer is. It's one of the major moves and the latest move where we've just bought the Royal Surrey, a ultrasound and it melds together with the MRI scanning into computerised version.

Clare Delmar:
So that's the fusion biopsy system?

Colin Stokes:
Well it fuses the two images. If you can imagine originally when they had the ultrasound and MRI scan, they had two scans to look at and they had to try visually to put the two scans together. That doesn't happen any longer at the Royal Surrey. They have the machine that gives them an absolutely crystal clear picture of where the cancer is in the prostate. And so their ability to then if they need to take a biopsy, it's a procedure done with either local or full anaesthetic and then they go straight onto the cancer and they can find out exactly how aggressive it is. So that bit of it, the diagnosis, is dramatically better.

Clare Delmar:
Yes, indeed.

Colin Stokes:
And then, of course, the choice I had was you had yourself cut open to take it out or you have radiotherapy, as I remember. I mean, it's a long time ago.

Clare Delmar:
Yeah.

Colin Stokes:
But I mean, I can remember he showed me the options and it was as far as I was concerned, it was take it out, let's get rid of it, which is what we did.

Clare Delmar:
Yeah

Colin Stokes:
That's the huge advantage advances in diagnosis and treatment has been amazing.

Clare Delmar:
And would you say you've been very much part of that journey through The Prostate Project?

Colin Stokes:
In a very small way, I mean, but this has been a world movement. And what's found out in California or Melbourne or South Africa is soon understood throughout the world. So, you know, it isn't about isolation, it's about collaboration. And the operation is amazing. The number of seminars and discussions and interchange going about that's really what made it successful. I think is a world effort. Each step in that world effort just adds to the importance of continuing to improve and never thinking your at the end of the journey, you're on the journey but not at the end of the journey. And I get worried when I see suggestions that this system's better than that system. That's just being competitive when it's not true. I mean, every person who gets prostate cancer should have access to every opportunity of treatment because with every person it's personal. And what I would want and what John would want and Bill would want and Graham would want, will be different.

Clare Delmar:
Absolutely. And of course, the individuals you just listed, each of their capacity to find information online, which, of course, really didn't exist 23 years ago.

Colin Stokes:
That's right.

Clare Delmar:
That's a big part of the journey, isn't it?

Colin Stokes:
You don't hide things. There is something that is crucial to The Prostate Project, which has been also in the base of its thinking and ambition and dynamism, is that this is about turning the Royal Surrey, St Luke's Cancer Centre, and then after a couple of years which is when we joined up with Frimley Park, turning them into a centre of excellence, a world centre of excellence that will give men a better chance of beating prostate cancer. And we look at what others do and we look at how other charities operate, and our difference is that we have remained focussed to that area.

Clare Delmar:
That's interesting. So I was going to ask you about The Royal Surrey, which is where this whole journey began, both for you personally and for the project. And your generosity in supporting that hospital is legendary. So tell me, for example, about the Stoke's Centre for Urology, which you've now established and how that's contributed to the world class Centre for Excellence.

Colin Stokes:
Can I take you through a bit of the history? Because there was a journey we went on. The first thing that happened was we realised that this was not going to last for a year and we weren't going to just raise £350,000 and we were going to close down. it became crystal clear that there was a much bigger need. So the first thing that happened was we realised that not only should we be working for the Royal Surrey, but Frimley Park Hospital, which is up the road, has a very effective urology department. And it was right that both should be welded together, not competitive but working as a duo. So that happened in 2000. And then we went and talked to Prostate Cancer UK in about 2001 or what was then a group of various charities amongst them. And we realised that actually the function of a local charity, like The Prostate Project, was not to advance world acknowledgement, but to make it effective here in this location. And that's when we decided that we focused on that. Then we realised that if you want to be really effective, you've got to have a powerful research arm. Now consultants do research, that's obvious. And there's a whole lot of research going on in the hospital. Just across the road from the Royal Surrey is Surrey University.

Clare Delmar:
Right.

Colin Stokes:
A highly capable technical organisation. And around 2004, we talked to Royal Surrey and they talked to us because there was mutual. They wanted to bring another area of medical research into the Royal Surrey. And we bid and got that position. And in 2006, having raised two million pounds, we funded the development... With the University of Surrey, we funded a research group, which has been in existence since then and is twenty five people strong or thereabouts, it's sometimes 20 because it has PhD students in it, but it's around 20 plus medics there. And they are operating as a research organisation under the aegis of the University of Surrey

Clare Delmar:
And is that funded entirely by the Prostate Project?

Colin Stokes:
It was a mutual funding, but they couldn't have done it without this and we couldn't have done it without them. So it was a highly beneficial mutual activity.

Clare Delmar:
And they're still continuing their research?

Colin Stokes:
Absolutely.

Clare Delmar:
And what are the highlights of their research? What are some of the things that they've been investigating?

Colin Stokes:
I'll tell you one of the things that's happened fairly recently. They've been treating advanced prostate cancer, there's always been a concern. You get metastases from a prostate cancer, cancer of the prostate, it moves to lymphs, it moves all around the body, to the bones, goes to spines. And they've always treated those metastases as if they were, in fact, prostate cancer. Well, two years ago, funding one of the PhD students as one of our very key supporters do. He discovered, along with a Canadian University that that is not what happens. It moves, but when it moves, it completely mutates and changes. Now, there is a proper technical term for that. And I'm sorry, I don't remember it, but if you get metastasised prostate cancer and then try to treat it as is prostate cancer it ain;t going to work, or it might not, it sometimes does. So that to me would be a highlight because nobody else in the world but the guy in the Royal Surrey, a PhD student, working with a colleague in Canada discovered this amazing fact, which means that, of course, treatment of men who have advanced prostate cancer, it can now be much more effective. Because now what they know is that if you actually have metastasised prostate cancer, they'll test to see if it responds to normal treatment. If it doesn't, they biopsy it and find out what the real cancer is that's in that particular location.

Clare Delmar:
OK.

Colin Stokes:
That doesn't sound a lot, but, you know, that's a huge step.

Clare Delmar:
Absolutely.

Colin Stokes:
A whole range of those steps have taken place in the 14 years that they've been operating. But the other important thing about that, when we put our money in, we said the one thing we don't want is a separated research group. So the research group, always the top guys, Professor Pandha and his top team, all do clinics in the Royal Surrey St Luke's  Cancer Centre. Now, what this means is they are day to day dealing with men with advanced prostate cancer, so that links research into reality.

Clare Delmar:
Absolutely, yeah.

Colin Stokes:
That was part of our money when we put our money and we said, look, that's what you got to do. And they agreed. So Professor Pandha, every week, is an oncologist working in Royal Surrey Cancer Center, St Luke's it's called, and that means he's constantly up to date.

Clare Delmar:
But does it also mean that the patients themselves are sort of given some sort of aspect of hope because they might be involved in research, whether it's a full fledged trial or just a new innovation?

Colin Stokes:
Of course, endlessly. I can remember being involved, talking to him and we were helping to fund an investment into a new trial of a new particular drug for advanced prostate cancer. And I remember saying this is about 2012. I remember saying, you better get on with this because you never know I might need it one day. Well I do. I did, in the middle of the pandemic, find that I needed that extra boost to my treatment and there it is. So that was the next step in the prostate project. So now we had two hospitals, all the consultants at the Royal Surrey, part of the Prostate Project, because one of the things we said right from the start, it's got to have in its trusteeship, it's got to have an equal number of medics to patients. So the trustees are balanced when they're looking at what we should do and how we should spend our money between people who are heavily involved in the medical side, and are heavily involved in patient side. And we have that constant debate and discussion as to what is the way we should best next proceed using the money we've got and using our effectiveness and bringing messages to other medical people, to doctors.

Clare Delmar:
Well, the other thing that I know about it is that the appreciation clearly goes both ways. And Royal Surrey awarded you with an honorary doctorate, I believe. And while I'm on that topic, the Queen has awarded you with an MBE. So can you talk a little bit about that?

Colin Stokes:
Yeah, well, the university awarded me the doctorate because it was a recognition for the charity of what we'd done with the university and yeah, you're quite right, the hospital for services to The Royal Surrey, I got an MBE. But look, that is all about the charity. That's all about the team. And I always feel it's a bit unfair for one person to be selected out of a team. I mean, the reality of the team in the Prostate Project, right from the start, they have been an amazing group of people working together, focusing on the next ambition. People have willingly given us time and energy and effort and money. And that's what's amazing about the Prostate Project, it's run with very few expenses. We have never had an office. We've never paid for an office. We've never paid for people. We 've never paid for administration. We've never had to pay rent and rates and have offices painted. We've never paid a chief executive.

Clare Delmar:
That's impressive. That's what I call an impactful investment in a charity.

Colin Stokes:
Yeah. Ninety six percent of the money we get given gets used in what we declare as giving men a better chance.

Clare Delmar:
That's very impressive. Very impressive. So, Colin, I just want to shift the conversation really quickly before we conclude that something else I think our listeners will be interested to know is, is that you were one of the first in the country to receive the Covid vaccine recently?

Colin Stokes:
I was. That was because I am a volunteer. I go into the Urology Centre and meet men and their families who are being diagnosed, have been diagnosed. And the urology centre is obviously at a high spot now because it is an absolute centre of excellence. It's a great centre, I don't know if you've ever been there, I'd be happy to show you around, it is a brilliantly designed centre designed largely by the medical team, led by Professor Steven Langley. And that centre works brilliantly because it brings all the people together who are involved in the diagnosis and treatment of prostate cancer. So I can assure you that is now, a brilliant centre and it's a centre that ought to be replicated elsewhere because it's so...

Clare Delmar:
That's an interesting idea, so it's like a template. But just to finish on the Covid vaccine, I wanted to ask you about how how that's impacted your outlook on health care generally, but more importantly, prostate cancer support in the UK. I mean, do you think we're kind of seeing a light at the end of the tunnel? And how do you see where we stand?

Colin Stokes:
Well, right now, I think the vaccine is going to be the resolution of this pandemic. And we will get it. And they're going to get it out very quickly. And I was very lucky because I'm a volunteer, I got it early on. But I don't act any differently. I just stay, we're still locked down. We're in tier four. So that's good. Can I just say one other thing...

Clare Delmar:
Of course.

Colin Stokes:
One thing about prostate cancer, which is never quite presented and we are in the process. You asked us what we're going to do? Well, we're going to present prostate cancer in a slightly different way because prostate cancer has no symptoms. This is a symptom-less disease and it only has symptoms when it spreads.

Clare Delmar:
Yeah.

Colin Stokes:
So the problem is people are encouraged, men are encouraged to wait until they have symptoms. In fact, when you go to doctors, even now, they say, have your water works gone? No. Have you got erectile problems? No. then what are you worrying about?

Clare Delmar:
Yeah.

Colin Stokes:
What we should be worrying about is the fact that more men are being diagnosed with it, but they're being diagnosed when they have symptoms. That means it's spread.

Clare Delmar:
Absolutely.

Colin Stokes:
so we're starting a raging war campaign on getting men to understand it's a symptom-less disease when it can be treated. Ninety four percent of the men who come to the urology centre at the Royal Surrey, and it's in the capsule are cured. If they come on when it's spread, then they're on a long journey. It can be an easy, long journey like mine. Thank God. Or it can be much more difficult and it can be obviously life-threatening. So the answer is to men and particularly to black men, because they get it ...

Clare Delmar:
More than twice the rate, yes.

Colin Stokes:
So black men should, particularly from the age of forty five and certainly from 50 up to 70, have PSA tests as a guidance to see whether they've got a problem. if they have, get themselves diagnosed because these days with the MRI and the ultrasound and now the fusion of this, the diagnosis is so much more accurate, so much more effective, so the treatment is so much more powerful.

Clare Delmar:
So how are you going to get that message out there, Colin?

Colin Stokes:
Well, what we're doing is we were in the process of running training programs with doctors in their surgery. The urology team were willing to go and talk. We were going to buy lunches for doctors and explain the reasons why things have changed, because things have changed. They've moved on. So we've got to make sure that every doctor who meets a man for whatever reason between the ages of 50 and 70, offers the PSA test as part of the normal process.

Clare Delmar:
So you're referring to GPs specifically here?

Colin Stokes:
Yes, GPs. Because if you think that you've got a lot of GPs who will be worrying about their cholesterol, about their weight, about their eating habits. We've just had an example, a man, a very close friend of mine who knew he should have had a test, didn't. He spent the last ten years having six monthly cholesterol tests. When we realized that his back was in a terrible state, we eventually got him to go to a spinal guy. And it turns out he's got prostate cancer with secondaries in the spine. If at any of those times when he was having his cholesterol done.

Clare Delmar:
He could of been doing a PSA test.

Colin Stokes:
Precisely, and it would have cost minimal amount of money. What it's now cost the NHS is two weeks in hospital, injections, support at home, all that, the money we spend and it's right we do it. But if we'd have tested him when we were just doing other things, we'd hve found that he'd got it, and  they would have treated it and it would have been cured.

Clare Delmar:
Colin, do you see a time when the PSA test can be self-administered and the campaign becomes something that's taken up not just governments and public health organisations, but even companies offering offering tests.

Colin Stokes:
I mean, we get a lot of men coming to use. We had one the other week. He's a very senior business person. He came, he's 56 and he had multiple metastases all over his body. He said, but I'm not unwell, I'm not ill. I'm perfectly well. I operate normally. Yeah, but you've got a serious prostate cancer. He'd got, I think, 10 different metastasised sites. Now he didn't know he'd got anything. Because he had been giving all his staff health checks, which includes a PSA, so we should be doing it anyway, testing. Even if it's self-administered. What we did... One of the early things we found, we have got a urine test that was developed at the Royal Surrey. The urine test, it worked perfectly. It absolutely will tell you whether you've got prostate cancer. But the problem was, is get it from the urine to a test. It's a very sticky protein. They just couldn't do it commercially.

Clare Delmar:
Right.

Colin Stokes:
So you can't get yourself a blood test. Now could you do a prick test? It's a very good question. I have no idea. But why not?

Clare Delmar:
Yeah, I mean, this is the issue. I mean, you're right about the urine test because it gives you an absolute cancer indication, whereas the PSA does not, as you say, it's only an indicator. But these are the things we need to be looking at because you're quite right. What's changed is the diagnostic process is so precise that if only we could get men to have the early test.

Colin Stokes:
It is true what you just said. But, you know, I'm worried about this sense that the PSA is not a good test for prostate cancer. It's a good test. Could it be better? Yeah. We're all very excited today about the vaccine that's going to give 90 percent protection.

Clare Delmar:
True. Very good point.

Colin Stokes:
OK. Now, if you had a PSA test that is actually ninety five percent, it occasionally gives you too low a result. Rarely does it give you too high a result. But I can get all that detail for you. But look, it's a fantastic test in the same way as the AstraZeneca vaccine is. That's just the same efficacy. Now, why do we get very excited about a test which gives you 90 percent protection? A PSA will give you 90 percent.

Clare Delmar:
Correct.

Colin Stokes:
Most of the people will be all right. Occasionally, someone isn't, or for the wrong reason. We've got to use what we've got effectively. And we could use PSA if we used it routinely with men between the ages of 50 and 70, we would have a dramatic difference.

Clare Delmar:
You're right. That's a powerful message. And I will ertainly endeavor to make sure all our listeners support that and come to your site to help you do that. We look forward to hearing more from what the Prostate Project is doing. Colin, thank you so much for speaking today with me.

Colin Stokes:
Thank you.

Clare Delmar:
It's been such a pleasure. Learned a lot and really want to help support what's an incredible project and an incredible team.

Colin Stokes:
I actually had to resign as chairman, I didn't have to, I chose to. Because at 82, I felt if something happened now, I needed to make sure there was a very good follow up. And there is. A guy called Alf Turner and he is now chairman, but I'm still obviously heavily involved.

Clare Delmar:
So for our listeners, a transcript of this interview is available on our website with a link to The Prostate Project so you can learn more and hopefully find a way to support its great work. Visit www.thefocaltherapyclinic.co.uk, where you can also learn about alternative treatments for prostate cancer and how we approach patient care at The Focal Therapy Clinic and access additional interviews with both patients and clinicians about their experiences with prostate cancer. Thanks for listening. And from me, Clare Delmar, see you next time.

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