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When Doctor Becomes Patient – an Interview with Dr Stephen Allan

 

 

Joining me today is Dr Stephen Allan, a retired consultant anaesthetist and former prostate cancer patient. Stephen has a unique perspective on how men are diagnosed and treated for prostate cancer, and shares his wisdom and experience regularly through Tackle Prostate Cancer as a patient representative, and as an advisor to NICE and the National Prostate Cancer Audit.

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, often avoided or even ignored. Frosty cancer is now the most commonly diagnosed cancer among men in the UK. And with this sombre fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Dr Stephen Allan, a retired consultant anaesthetist and former prostate cancer patient. Stephen has a unique perspective on how men are diagnosed and treated for prostate cancer, and he shares his wisdom and experience regularly through Tackle Prostate Cancer as a patient representative and as an adviser to NICE and the National Prostate Cancer Audit. Stephen, thank you so much for joining me today.

Stephen Allan

It’s a great pleasure, Clare. We’ve talked a little bit beforehand and you know that I tend to like the sound of my own voice, well that’s what my wife tells me. I am really passionate about trying to change how prostate cancer is treated and how patients are treated as well. Perhaps I’m a little bit evangelical…

Clare Delmar

We need people like you Stephen and hopefully we’ll be able to bring that out. So without further ado, why don’t we start right off. And I guess the first question I’d like to ask is based on your experience as both the doctor and the patient, what is the good news for men with prostate cancer and what would be the bad news?

Stephen Allan

I think that undoubtedly the best news we’ve had has been multi-parametric MRI. That has to be, I don’t know, the total game changer in recent years. It’s now possible to actually see inside the prostate, which we couldn’t do. You can accurately determine the size and the position of the tumour. There’s a scale to interpret aggressiveness, the PIRAD score. And just as important as having that investigation is that it’s now been accepted nationally on accepted treatment pathway supported by NICE. Men should have a multi-parametric MRI now before they even have a biopsy. That’s been a major major step forward. It’s also produced a lot of spin offs, I think. The ability to more accurately target biopsies of the prostate now. We can see where the needle is going, which we never could do.

Clare Delmar

So the randomness is fortunately done.

Stephen Allan

Absolutely. And we can now identify patients with these small, potentially very slow growing cancers that may never need radical treatment or indeed treatment at all. And they can go into active surveillance programmes and can be sensibly and accurately monitored, which again, we couldn’t do, certainly not when I was diagnosed 13 years ago. So we’ve also identified patients for whom major surgery just might not be needed and you can use more localised treatments. Well, that has to be good. If the treatment is as effective, but the potential is for much less side effects, why should we be doing radical major major surgery. Multi-parametric MRI itself has already begun to evolve. There are techniques which are quicker to perform, simpler. There is talk of even putting those in place of screening.

Clare Delmar

I’m going to come on to that a little later. I think, you know, what you’re saying is as well, certainly what we believe at The Focal Therapy Clinic. But it’s interesting to hear it from you who did not enjoy that advancement when you were a patient yourself.

Stephen Allan

Yeah. And I’ve got to say, as a traditional died in the wool old man and an old doctor, accepting newer techniques can be quite difficult for people. We’ve always done it this way. Why should we change? The reason for change is allowing men to have less side effects and to be able to go into these treatments for prostate cancer with less fear. I think fear is a great factor. I think we’ve got more sensitive investigations in addition to your conventional MRI and CT, they might sort of be described as static investigations. They detect changes in tissue density. They look at the anatomy, the structure, the position of the tumour, but they can’t show how active it is, how fast those cells are dividing. And now we’ve got PET scanning. I describe that as an active scan, not only is it showing where it is, but the cell activity, those cells of high activity, which may well indicate that there are metastases. If there’s cell activity where they shouldn’t be, then you’ve got to find out what that is. And I think that’s the huge benefits.

Stephen Allan

And, of course, that’s so much more sensible; you’ll be picking up men with very much smaller secondaries and at a stage when they will be easier to treat, much earlier than conventional scans could do.

Clare Delmar

I hate to say this, but what about the bad news? That was part of my initial question to you.

Stephen Allan

Much of the bad news we’ve known about for a long time, to be honest, but there seems to be very little in the way of change. Men are still being diagnosed too late. I sit as you know on the National Prostate Cancer Audit. And figures show that the time of first diagnosis, barely 50% of men have the tumour confined within the prostate capsule. That spread may be very, very localised, but it is enough to have severe implications to influence your treatment options. And even worse, 15% of men will already have distant metastatic spread.

Clare Delmar

Do you think the endemic has influenced that?

Stephen Allan

Well, the pandemic has influenced things such that fewer men have been diagnosed, fewer men have been referred for treatment, fewer PSA tests have been done. I mean, the figures that are being bandied around are things like 50% reduction in referral to urologists, up to 10,000 men not being treated either not being treated at all because they weren’t referred or that their treatment has been delayed for whatever reason. It is bad news, but it’s news that we know about. People are still being told if you don’t have urinary symptoms, you don’t need a PSA test. Well how wrong that is. How many men have had their futures ruined by this sort of advice. We see lots of people like that who are volunteers within our organisations.

Clare Delmar

So I want to just pick up on something you said earlier about when you talked about the precision that multiparametric MRI affords patients and how that underpins less invasive and more accurate treatments that, and this is the point, don’t deliver the kinds of side effects that you have with more radical ones. So we’ve spoken before and you’ve spoken very openly about incontinence and its impact on men post treatment. So I guess I’m really interested in what advice you would give to men in making choices about treatments for prostate cancer and how you think that this particular debilitating side effect can be better managed?

Stephen Allan

I vividly remember two very important days in my life, Clare. One was a day when I was told I got my diagnosis. The second day was when I realised I was likely to be totally incontinent of urine for the rest of my life. I had emotions of abject despair. I felt totally alone. I openly wept for the first time. I had no idea just how important a normal life being continent was. There was my young granddaughter proudly telling me that she was now dry at night and didn’t need to wear nappies, and there was me, her grandfather, barely sixty years old. I still remember that day. Much of despair comes from ignorance. Much of despair comes from not knowing how incontinence is produced and how it can best be managed. I didn’t know how other men had coped. And because of my status as a consultant, many healthcare professionals found it very, very difficult to even talk to me about it. So the incontinence nurse was helpful. But talking to other patients in a support group, finding out how they coped was the best thing that I have done. I took control. I made decisions for myself and had a bit of a long journey which there’s no time to go into. But I now have an artificial urinary sphincter implanted. I had no knowledge of that before my operation. It’s revolutionised my life. It’s changed me from being totally incontinent to being 96 continent. It’s amazing. So what would I say to patients? Firstly, discuss how you feel with everybody – doctors, nurses and especially other patients. It’s difficult to know, though, when is the best time to start conversations? How much information do they want and when will they take it in, particularly pre treatment. And never never accept being told, oh, you’ve only got minor incontinence. However large or small your leakage is on the sort of standard scale medics use. If it’s a problem for you, then it’s important….

Clare Delmar

…then it’s a problem, absolutely.

Stephen Allan

Get lots of opinions if you can if you’re considering surgery. There are lots of different treatments. It’s important to get the right treatment for the right level of continence. Talk to patients who have had the same treatment as the one that you are considering. I spoke to somebody, a complete stranger I never met before about my artificial urinary sphincter. It completely made me feel I was making the right decision. It really did. And the time it takes to get treatment for incontinence is really quite distressing. I was told nobody would do anything for a year, a year. My experience now is that, I don’t have any data that’s published that gives specific time scales about when you should have surgical remedies. And yes, it does allow plenty of time for nerves and sphincter muscles to recover. That said, my personal experience, speaking to men with severe incontinence like myself, after six months, you’ve got what you’re going to end up with. So start earlier, start making a noise at six months because, you know, on the NHS, it’s going to take so long to get a referral, it’ll be year before they do anything anyway.

Clare Delmar

Yeah. I mean, the sort of fore-warned is fore-armed argument I suppose?

Stephen Allan

I think so. I say I can’t stress enough, everybody’s an individual. It’s your body, it’s your problem. You make the decisions and nobody else does. I was just told I needed to wear a conveen for the rest of my life. There was no way I was going to wear a flaming leg bag for the rest of my life.

Clare Delmar

The other challenges, you mentioned the word fear earlier in the conversation and that can be an incredible barrier, to say the least, in terms of taking in this information and really visualising what life might be like.

Stephen Allan

And fear, like I say, comes from lack of knowledge. I do a lot of talks on incontinence, sexual dysfunction, to support groups. I am horrified at how little men know about their very basic anatomy and how their body works. If you can understand how your body works, then you can understand a bit about how it goes wrong. If you can understand how it goes wrong, you can understand treatments that might be offered to you. And I think even more important than that is, you can understand why treatment may not be suitable for you when it’s very suitable for the bloke sitting next to you.

Clare Delmar

Yeah, exactly. I mean, you know, it takes the idea of personalised medicine to a new dimension, doesn’t it?

Stephen Allan

Yeah, I quite agree. Quite agree.

Clare Delmar

So we touched earlier when you were talking about multi-parametric MRI and now that is yeah, literally, you use the word revolutionised and I quite agree with you. Again I’m interested in your perspective as a former NHS doctor for many, many years, you’ve experienced firsthand how new procedures, new techniques, new technologies are adopted and implemented. How quickly do you anticipate some of the advancements we’re seeing now in prostate cancer diagnosis and treatment being adopted? And I’d like to specifically talk a little bit about how you see, for example, screening being done through imaging techniques that are developing. Do you think it’s going to take off and how soon?

Stephen Allan

To be honest, it’s always been a bit of a mystery to me how change can sometimes come about. Drug therapy has got a fairly standard process it goes through, and then it has to go through NICE and all that sort of thing. Surgical techniques, diagnostic procedures seem to be very different, and there seems to be a sort of very often the holdups in progress are not because people don’t think that the procedure is bad, good or whatever, but it’s very often because of financial implications and a good example of that is robotic surgery, incredibly expensive outlay on equipment and wasn’t initially taken up very widely because of the cost, but now is the standard technique. What about screening? What about at the front end is so important? For me, I can’t see any great change happening in the next seven years, plus.

Clare Delmar

That’s a worrying thought. Before I ask you to just expand on that, I just want to pick you up on the robotic comment you made a minute ago and show how that took a while to become implemented, but then it became, as you say, a standard of care. Now there are some people who would feel that because it took so long and because it was so capital intensive that that’s now “blocking”, using that word, sort of in inverted commas, other treatments being used because and maybe this picks up on your financial consideration comment, that hospitals want to fully depreciate their robots essentially and are doing at the expense of other treatments. I know that’s a very big statement, and I’m just interested if you think there’s any truth to that?

Stephen Allan

I think it’s a difficult question to answer, because what you’ve got to have at the very front end of all this is people that want these new procedures, and it only comes with newer people coming into the specialties. They bring with them those new ideas. It’s very easy as you get older in life not to want to learn anything new. But yet capital is a huge problem. A lot of hospitals well, not recently, but in the very early days when people were fundraising, suddenly found that, yes, some big charitable donation bought them a really lovely, expensive bit of equipment. But suddenly they’ve got the bill for maintenance, they’ve got the bill for servicing and that sort of thing. So it’s not only the capital cost, it’s the running costs you have to talk about. But, if you can get the same result for less time in hospital, for less side effects. I think when you’re costing a procedure, people don’t look far enough down the line. It may well be cheaper to do something in a way, but if then two years later it’s producing lots of side effects, which then need treatment, those somehow should have been included in your cost assessment…

Clare Delmar

And they’re not and it’s frustrating, which actually leads me to another point, which is quite topical coming out of the pandemic, and that’s around something people term health inequalities. So we talked about robots and some hospital don’t have them, some don’t. So various behaviours, various decisions, various procedures are going to emanate from that. The pandemic has clearly exposed significant health inequalities. And this is when I say inequality, I’m thinking geography, population, healthcare needs. And there are a lot of studies now that demonstrate this. But you know, what’s interesting about that is that we know that there have been inequalities amongst men diagnosed with prostate cancer, and some of these are along racial lines. But I guess what I just want to focus on because I know we could talk about this forever, is what are your thoughts on how you think, like the variability of some practises that you’ve even talked about, for example, radiology reporting or treatment options? How do you think that that is impacting some of these inequalities?

Stephen Allan

I think it is to an extent. We all know that you need manpower to run the equipment, to look at interpretation of results, and we know that there are shortages. We are increasing the number of, let’s say, multi-parametric MRI scans we’re doing. You need somebody who’s skilled, who’s experienced to interpret those. I think in the future, artificial intelligence may be one way of making things slightly easier. You can train computers to look at, and it’s probably easier to train a computer to look for the normal rather than the abnormal. So then you can free up time of your specialist, if you like, to look at the more abnormal ones, the ones, but you need confidence in doing. And that’s already being done to an extent in certain things in radiology, but not as far as I am aware, greatly with prostate cancer at the moment.

Clare Delmar

We know people who are looking into this, but again, it comes back to your point about how long things take to become fully implemented.

Stephen Allan

And it takes a long while for somebody to be experienced. There is no substitute for experience, absolutely none at all.

Clare Delmar

So I guess a final question is to really kind of bring this back full circle and to ask you, as a doctor, becoming patient advocate and one that’s been incredibly supportive to men through these various support group are involved with, what are the most common concerns within these support groups?

Stephen Allan

The two that obviously are quantity of life. How long am I going to live for? Will my cancer come back? Am I going to die? And quality of life. Dealing with side effects of both the disease and the treatment. By their very nature, support groups tend only to attract men with problems. By default, we’ve tended to talk about men with prostate problems, but prostate cancer affects everyone, particularly wives, partners, so certainly, as far as Tackle is concerned, we want to be there for everybody who’s affected by the disease and you scratch the surface and so many more factors come to light. Yeah, we talk about incontinence, sexual dysfunction, but the side effects of hormone therapy, the psychological and mental health issues, generalised fatigue, strain on relationships, not being able to work, financial difficulties. These are all problems which patients have to deal with them. An to an extent, patient advocacy groups can’t cope with all those. But our job should be to realise that we can’t do that and then to direct people to those specialists who can help them.

Clare Delmar

Do you think there are enough of them around?

Stephen Allan

No, no, you can have huge numbers and it would possibly never be enough. It’s an ongoing and ever evolving problem. The disease of prostate cancer that was around, if you like, when I was diagnosed 13 years ago, is entirely different to the way we diagnose and manage today.

Clare Delmar

And that’s not just because of the multiparametric MRI?

Stephen Allan

It’s absolutely everything – the diagnosis, the treatment. And I confidently predict if we have this conversation again, if I’m still alive in 13 years time, and will we be saying the same thing?

Clare Delmar

OK, 2034, okay. Do you think? Do you think by that time some of the things we’ve touched on in this conversation will have been implemented?

Stephen Allan

Yes I do. Yeah, I think in 13 years time, yes, we will have a better way of diagnosing not only prostate cancer, but the aggressiveness of it. At the moment, PSA is a brilliant test and is I think unfairly rubbished by some people. It is a good indicator of prostate health, but it is not an indicator necessarily that you’ve got prostate cancer and the aggressiveness of it. It’s also still brilliant at monitoring progress once you’ve been treated. But we need something better than the PSA. And I do think we will have that in 13 years time.

Clare Delmar

And hopefully these other sort of non clinical issues around the sexual health and urinary health will become a little bit more holistically integrated into….

Stephen Allan

Well let’s hope. I hope men will have the courage to talk about it. Yes, there are lots of things that we cannot change in 13 years time. Some of the socioeconomic issues that we know are people with lower social economic status do much worse in prostate cancer. And that’s a terrible thing to say. And it is a fact, but it’s a fact in not only prostate cancer, but in areas.

Clare Delmar

Across the board, yes.

Stephen Allan

And similarly with ethnic communities, you can’t change the traditions of hundreds of years in just another 13, but it will need a very sensitive approach.

Clare Delmar

Stephen, thank you so much for speaking with me. \

Stephen Allan

It’s been a great pleasure.

Clare Delmar

It’s been really, really valuable and I’m already coming up with a number of other sub specialty areas that I’d like to speak with you again about, so I hope our listeners will look for to the next time, but really we covered quite a bit and your insights are both personal and professional and that’s incredibly valuable. So thank you very much.

Stephen Allan

Thank you, Clare. Thank you.

Clare Delmar

Further information on diagnostics and treatment for prostate cancer is available on our website, along with the transcript of this interview and additional interviews and stories about living with prostate cancer. Please visit www.thefocaltherapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening and from me, Clare Delmar, see you next time.

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