When Success with HIFU Focal Therapy Inspires a New Charity
August 1, 2020
An interview with Prost8 founder and focal therapy patient Paul Sayer
Summary:
Paul Sayer walks through his journey with prostate cancer. Despite having no symptoms and a low PSA, his physical exam revealed concerns.
He explains how he was initially offered traditional treatments (surgery or radiotherapy) but researched alternatives and discovered HIFU focal therapy.
Sayer clarifies why he founded the charity Prost8 and how it aims to raise awareness and increase the availability of alternative treatment options like focal therapy.
He details how Prost8 are planning a campaign called "Prostate Cancer: Know Your Choices" to raise funds to donate focal therapy equipment to strategic NHS hospitals to improve access to these treatments.
Prost8 founder Paul Sayer discusses his personal journey to establish a charity aiming to change the conversation around prostate cancer treatment.
Listen to Paul’s story (17:57 listening time) or read the transcript below (estimated 2 minute read):
Please find below a written transcript of the interview, and call The Focal Therapy Clinic today to discuss your prostate cancer treatment options: 020-7036-8870.
Clare Delmar:
Hello and welcome to The Focal Therapy Clinic. My name is Clare Delmar, and in this audio series, I’m going to introduce you to some issues facing men diagnosed with prostate cancer that are little known, less understood and almost never talked about. Earlier this year, prostate cancer was acknowledged as the most commonly diagnosed cancer in the UK. With this sombre fact comes a multitude of challenges and opportunities. In the seventh of our series, I’m speaking with Paul Sayer, founder of the charity Prost8, which describes itself as a new force in the fight against prostate cancer. Diagnosed with prostate cancer in 2018, Paul rejected his consultants’ advice to undergo invasive treatments and opted for focal therapy. And he’s now on a mission to ensure that all men have this treatment option. Paul, thank you so much for joining me today.
Paul Sayer:
Hi, Clare. It’s a pleasure to be here.
Clare Delmar:
Can you just talk really quickly about… you’ve got a very interesting spelling of prostate. So I think it’d be interesting just to start off with why it’s spelled the way it’s spelled.
Yes, it is indeed. And I suppose we’ll get on to that in a few minutes. But can you tell us a bit about your personal experience with prostate cancer?
My prostate cancer journey
Paul Sayer:
I guess the story starts fully back in about mid 2015. A very good friend of mine, Steve, had gone through a very nasty prostate cancer journey himself in his early 50s, which he almost didn’t survive. And as a result, he kind of made it his personal crusade to make sure other men got themselves checked and that included me. But really, I had no obvious symptoms whatsoever. So like most men, I just carried on and basically ignored him. Anyway, one, I guess, fateful Saturday morning late in 2015, I had an unrelated doctor’s appointment and having seen Steve the previous evening, it was on my mind. So I asked the doctor if I should get my prostate checked. He asked the usual questions. I said that I had no symptoms, but to his credit, he said, as I had just turned 60 at that point, it might be a good time to have a look. So he did the rectal examination, found some enlargements and a bit of hardness, but said it was probably just age related.
Clare Delmar:
And you had no symptoms at all?
Paul Sayer:
No symptoms at all. No, no, nothing to indicate it whatsoever. He said that they would keep an eye on me over the next couple of years. But of course, as you know, this never happens. And I didn’t visit the doctor again until very early in 2018, which is two and a half years later…
Clare Delmar:
OK
Paul Sayer:
…again, for an unrelated issue. It was a different doctor, but while I was there, I thought I’d mention to her that I was meant to have my prostate checked along the way. And oddly, she seemed just so resistant to wanting to take it any further. It was a case of if you have no symptoms, don’t worry, which is quite common, unfortunately. In fact, she was kind of so unnecessarily anti that she made me take exception, especially knowing that I did have some enlargement. So, I guess I made a bit of a fuss. And eventually she reluctantly agreed to arrange for me to see another doctor at the same practice for a rectal check a few days later and arranged a PSA test.
Clare Delmar:
OK.
Paul Sayer:
PSA test reading came back at about three point eight. So certainly not dramatic, quite low. But then I was seen and examined by another doctor and he immediately said my prostate was hard and grainy. So he wanted to refer me for further investigation, which is the first sort of worrying sign.
Clare Delmar:
Indeed.
Paul Sayer:
So I zoomed off to the hospital and following a series of scans and a biopsy, I was told that I had quite a sizeable tumour on one side and some lesser spots on the other.
Clare Delmar:
Wow
Paul Sayer:
Yeah, that sort of set the worry even further.
Clare Delmar:
Of course
Deciding my best treatment option
Paul Sayer:
The usual happened, I was referred off to the urology department at the local hospital to see the specialists and to decide upon a treatment pathway. Fortunately, I did some homework ahead of that, made myself aware of all the possible options, sort of both mainstream and those that were in trial at that time. As you probably know, even now, most resources just point to either radiotherapy or surgery, removing the prostate completely. There’s not a lot out there on focal therapy or maybe you get offered hormones and watch and wait. But I also found some information on the newer focal therapy treatments, such as HIFU and cryotherapy. So it doesn’t need saying that I certainly wasn’t keen on the possible side effects of radiotherapy or surgery, there being a very high chance of both incontinence and erectile dysfunction. When I got to see the surgical consultants, I saw both the radiotherapist and the surgeon within about 20 minutes of each other, I asked them about HIFU among some of the other options that were available. But remarkably, between them, they said that HIFU was not suited to my kind of prostate cancer, that it was highly experimental and it was only available as part of trials for advanced cancer. I knew differently to that, but they were saying I needed more traditional treatments and quickly, basically.
Clare Delmar:
And did you get a sense that it was considered risky or simply that it wasn’t available?
Paul Sayer:
It was really a lack of knowledge. You could almost read between the lines when you were told they didn’t really have the knowledge, so they were hiding behind their own specialisations to cover that lack of knowledge.
Clare Delmar:
OK
Paul Sayer:
So from my research, I knew that I could have different options, but when I spoke to them, they were actually almost annoyed that I dared to question them and one of them even got almost angry about it. And I have to say, I did actually phone back into the hospital later to make a complaint that I was being sold their choices rather than being told my choices.
Clare Delmar:
And this is NHS? I mean…
Paul Sayer:
This is NHS, my local hospital, urology department.
Clare Delmar:
Of course. How did you find the availability of HIFU?
Paul Sayer:
I had two options at that point. They wanted to rush me into surgery in seven to ten days or put me on radiotherapy. So I opted for the radiotherapy simply to buy time because I’d got this HIFU thing in my head and wanted to explore it. The radiotherapy I chose purely because it involved six months of hormones ahead of the actual treatment. So that gave me more than the seven to ten days they were quoting for surgery. So in those following weeks, I researched, wrote, phoned, badgered every consultant I could find in the UK working on alternatives.
Clare Delmar:
Wow.
Paul Sayer:
And cutting a very long story short, I eventually found Professor Hashim Ahmed at Imperial College Hospital in London and saw that he was working at the forefront of focal therapy and offering it as an NHS treatment at that point. So I wrote to his secretary, she advised me to get a referral to the prof from my GP, which again I managed but with resistance. And as a result, I first saw the prof in March of 2018 to be told I was actually an ideal candidate for HIFU and he would readily accept me as an NHS patient.
Clare Delmar:
Wow.
Paul Sayer:
And I then went to have some updated scans at Imperial College. My treatment took place in July of that year. It was a day stay procedure. I was in theatre under a general anaesthetic for a couple of hours and that evening went home with a catheter fitted, basically. One week later I returned for the removal of the catheter, a quick check up and they said all appeared well. So basically go and get on with my life.
Clare Delmar:
So you had quite an experience and you obviously built up quite a foundation of knowledge. How did this lead to the founding of Prost8?
Founding Prost8
Paul Sayer:
I previously worked in the charity sector organising major events and consulting for charities, everything from a major HIV charity through to Help for Heroes for more than 15 years. Ironically, I’d taken a break at that time for a couple of years to help my son in his technology business. Having come through the cancer, I kind of felt the time was right to get back to what I knew. So the prostate cancer was the ideal challenge. I’d got a bit of knowledge, so the two came together. Explained my plans to Professor Ahmed, and was shocked to find out that almost 12,000 men every year with a low level, treatable prostate cancer like mine were being given the same invasive treatments as those with advanced cancer. So that was the driver.
Clare Delmar:
Absolutely.
Paul Sayer:
All those men were suffering life changing side effects, it just wasn’t necessary. So that’s what drove me to go further.
Clare Delmar:
Well, that certainly sounds like one of the most significant things. But has there been another very significant thing you’ve discovered about men receiving prostate cancer treatment in the U.K.?
Paul Sayer:
Yes, that basically the same journey I had really, that they’ve gone through the procedure of visiting their urology department, but being offered nothing more than the tools that the hospital has in its toolbox, basically, which is usually watch and wait with a few hormones, radiotherapy for five weeks, five days a week, or surgery to remove the prostate. I started looking around to see where men could get treatment for focal therapy if they did find out about it, and I was even more shocked to find that they were literally only a couple of NHS hospitals with focal therapy equipment in the entire UK, and they’re only in London and the south east. There’s fortunately private facilities such as yours, but that’s obviously not accessible to everyone. And I know that some hospitals rented in equipment for a few days a year, but for the average man with prostate cancer, they’d never even be told that they had that less impactful option.
Clare Delmar:
So, yeah, quite. I mean, there’s kind of two sides to it. I mean, you’ve well articulated the limited resource in providing it. But equally, I mean, you must have some thoughts since you’ve set up Prost8 and talked to men that had experienced what you’d experienced, that they don’t really have the knowledge or the awareness to even ask the right questions.
Paul Sayer:
They don’t, no, that’s the trouble. I guess our mission statement, if I was to say, is just to help men to live the best lives possible after prostate cancer. And that means they need to know the best treatment options that are available to them.
Clare Delmar:
And what’s the reception to that? I mean, on the sort of prospective patient side, do you feel that men react in wonder, in horror, in gratitude for the awareness you’re raising? How do they respond to the fact that there is something else that they haven’t been told?
Paul Sayer:
Well, most of them, like myself, they’re quite shocked that they were never told this at the point of diagnosis. We’ve had quite a bit of reasonable national press coverage in the last year, sort of in the Times and the Mail on Sunday….
Clare Delmar:
Indeed, yes.
Paul Sayer:
… and men have picked up from that. My story, if you like, and I contacted the charity to say, how do I get involved in this? Well, at the moment, locally, there is no option. So very luckily, the Imperial College London have taken quite a number of men that we’ve managed to redirect away from their local facilities to be given HIFU treatment there. I know a couple have also gone with the private route, so we’re having an impact along the way to get people better lifestyles.
Clare Delmar:
And why do you think that focal therapy doesn’t get the attention it deserves?
Raising focal therapy treatment awareness
Paul Sayer:
That’s a good question. I think the NHS has invested heavily in recent years in the traditional methods, shall we call it, so they’ve upgraded radiotherapy suites dramatically at great cost. They’ve installed DaVinci robots to carry out prostatectomies. That’s quite a few million pounds apiece and training that goes with it. And I think that they are too keen at the moment to get the best value out of those rather than looking at the alternatives out there, especially when you think that for focal therapy, it’s a fraction of the cost to install the equipment, one day stay so there’s no hospital stay involved, and recovery times are phenomenally quick and the ongoing care is almost nil. And you certainly can’t say that about radiotherapy or surgery.
Clare Delmar:
No, I mean, you’re absolutely right. And then not to mention that, you know, with minimal or zero side effects, you don’t have the follow on or associated problems that you might have that would require someone to seek further treatment. Yeah, the economics of it, I totally agree, seem to really be one attraction, certainly for a hospital, not necessarily from the patient’s point of view. But do you think that’s really the main reason or do you feel it is anything else you’ve learned in your work in the last two years?
Paul Sayer:
There’s a lack of knowledge right the way through from GP’s to urologists, basically, that some have a vague recollection in their periphery that there is another option out there. They’ve heard a bit about HIFU. Some will have done the usual thing, gone to the Internet, found out that the information is probably 8 to 10 years out of date, and it’s talking about it being a trial and suchlike. But they take that on board and that’s their knowledge base. So as a charity, our job is basically to get that knowledge out there from GP through to urology department. But our aim is to get the men on the street to know what their choices are. So when they rock up at their GP or the urology department, they can ask, they can say, no, I know there are other options and that’s the problem. Men turn up and they don’t have a clue other than what they’re told and they trust what they’re told.
Clare Delmar:
Yeah, I mean, that’s an interesting point. I mean, are you getting any sense that that you’re breaking through?
Paul Sayer:
We’ve had an incredible number of calls during the COVID period from the men who have just been dropped out of the NHS, basically, and can’t get anywhere.
Clare Delmar:
Yes. Yes.
Paul Sayer:
But the ones that are coming to us when we’re pushing them back towards their urologists and sometimes their GPs, we are now seeing that they’re prepared to give them referrals on to, as it has to be Imperial College or someone like yourself at the moment. They are getting the referrals now, whereas in the early days, going back to a year or so ago, the resistance was incredible from the medical profession.
Clare Delmar:
So do you think that, just kind of pulling the last two strands together, that as the NHS moves into a post COVID recovery phase and has to address quite significant backlog of patients, do you think that focal therapy might have a new place in prostate cancer?
Do you think that that’s resonating with the population and with the NHS, or do you think that the driver is really the patients being more informed and having the confidence to ask more for alternative treatments?
Paul Sayer:
I think it’s going to be a combination of many things. I mean, one of the things we’re working on is to commence lobbying. So we’ve managed to get the ear of a few MPs who are very amenable to the idea. We’re working with Imperial College and other departments like theirs to start lobbying within the NHS and where possible and I suppose just make a big nuisance of ourselves until someone listens.
Clare Delmar:
And how about follow up? I mean, do you find that people who’ve had focal therapy have actually I mean, in addition to being relieved that they’re disease free with no side effects, do you think that they’ve also placed lots of gratitude in you and your campaign and may really help become advocates themselves?
Paul Sayer:
They do, yes. We’ve had we’ve had quite a bit of that, I must admit. Some people just disappear off the radar and get on with their lives because they’ve got what they wanted. We have a few who are becoming almost ambassadors for us now who are pushing that message and are going back into the NHS to let them know what their outcome was compared to the one they were being offered.
Clare Delmar:
So, Paul, how do people then find Prost8? What’s the best way to engage? Is it online? Is it on social media? Maybe you can just run through…
Paul Sayer:
Yes it’s on social media, mostly as Prost8, P R O S T 8, again. We have the website, which is prost8.org.uk or we have our telephone line, which is 0203 8580848.
Clare Delmar:
And if somebody listening to this decides to get in touch with you, what can they expect on first engagement with either you or one of your team?
Paul Sayer:
The first thing we do is make sure they’re aware of the choices they have. We provide them with the information they need to return to their urology department or GP to get referred to the right treatments they’re looking for and we help them through that by keeping them informed of their rights within the NHS and wider as to how they can insist almost on these referrals.
Clare Delmar:
And by rights, are you referring to like the Montgomery ruling, for example?
Paul Sayer:
Yes, that’s part of what we refer them to. It’s that and links to the NHS’s own pages about your rights of referral, etc. So we give them quite a comprehensive package of information.
Clare Delmar:
That’s really good to know. And I know it takes people like you to really build up that head of steam. And really it’s about… I mean there’s a lot of information out there, as I’m sure you would agree. Sometimes there’s almost too much. And when you are in a situation where you’ve just been diagnosed with prostate cancer, you’re not always in the best place to absorb all that information. As I’m sure you’ll agree…
Paul Sayer:
Certainly not.
Clare Delmar:
…having the ability and the capacity to counsel men who are in that sort of state of mind and build that confidence, I think is really crucial in this.
Paul Sayer:
It is. But one of the most important parts of the campaign we’ve got coming up. We’ve actually got a campaign starting later this year, which is: Prostate cancer, Know your choices. And that will be the foundation of how we get the message out there. Behind that is a huge campaign to raise some significant funds to start buying, donating and deploying focal therapy equipment into strategic NHS hospitals, basically. So the access is widened so we can get more and more men through. We’ve got to reduce that twelve thousand a year figure.
Clare Delmar:
Right. OK, Paul, thank you so much for your insights. It’s been an absolute pleasure talking with you and best of luck with Prost8 and the campaigns that you’re that you’re developing.
Paul Sayer:
Thank you very much.
Clare Delmar:
A link to Prost8 and it’s social media content is available in the programme notes to this interview on our website, www.thefocaltherapyclinic.co.uk, where you can access additional interviews with patients and clinicians about their experiences with prostate cancer. And from me, Clare Delmar. See you next time.
If you’ve got any questions about your prostate cancer diagnosis or want to know more about HIFU or NanoKnife, don’t hesitate to get in touch with our friendly, knowledgeable team.
