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Active Surveillance: a double-edged sword

41 Michael Clay.wav
Michael Clay came to the Focal Therapy Clinic after having been placed on Active Surveillance at Torbay Hospital in South Devon. Michael’s a 76-year-old retired banker who leads a very active life with his wife and family which, despite his early-stage cancer diagnosis, was being severely compromised by his treatment. He encountered several issues which he feels are very important for all men to hear and understand before they make decisions about treatment for prostate cancer, and he’s joined OnFocus to discuss these.

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. Prostate cancer is now the most commonly diagnosed cancer amongst men in the UK. And with this sombre fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Michael Clay, a recent patient at The Focal Therapy Clinic who came to the clinic after having been placed on active surveillance at Torbay Hospital in South Devon. Michael’s a 76 year old retired banker who leads a very active life with his wife and family, which, despite his early stage cancer diagnosis, was being severely compromised by his treatment. He encountered several issues which he feels are really important for men to hear and understand before they make decisions about their own treatment for prostate cancer. And he’s here today to discuss these. Michael, hello. Welcome and thanks so much for joining me today.

Michael Clay

Hello Clare, and thank you for inviting me.

Clare Delmar

Wonderful. Well, why don’t we start right in and share your story? I mean, if you can be kind of brief, but just kind of highlight your experience from when you were initially diagnosed to when you ultimately got treated with focal therapy?

Michael Clay

Through my life, I have always had my PSA taken and it was always in the mid-range. However, during the autumn of 2018 and through 2019, my PSA started to rise. By 2020 it was just under the then max of 6.5. By June it was just a bit over that much again 6.55. And so my GP referred me to our local hospital who did a digital rectal examination that didn’t prove anything and an MRI scan, the results of which were no cancer in the left, but we couldn’t see the right due to your metal on metal sports hip. So just to be sure, let’s do some biopsies. So biopsies were taken and amazingly, the results came back saying they’d found cancer in the left. It was a low grade Gleason score six and I was to be put on active surveillance without any further discussion. Gosh I was really worried. There was no willingness in the hospital for discussion. But I do accept that we were in the middle of a covid pandemic and maybe that was the reason. My concern was why was my MRI on the left clear and yet the biopsy showed cancer on the left? I started thinking, could I have missed something or could they have missed something?

Clare Delmar

So can I just interrupt really quickly? You mentioned you were describing your scan that there was a metal on metal. Can you just explain that a little bit?

Michael Clay

Yes. Back when I was 60, I had some arthritis in I got hit on rather than having a hip replacement, I had what’s called a metal on metal hip resurfacing.

Clare Delmar

So that impacted the imaging.

Michael Clay

That impacted the MRI scan. And so the biopsy was taken to really check the right hand side to make sure that was clear. However when the results came back. They were that there was cancer cells on the left, but it was very low grade. So because there was not the opportunity to have a discussion, I carried out my own Internet search. So I looked at all options. At that point, I saw HIFU from the focal therapy group and I thought that looked really promising. I watched some of the videos and I then emailed The Focal Therapy Clinic for further information. While I was quite surprised because that afternoon Brian Lynch telephoned. Really very pleasant gentleman and he was very reassuring. He explained the entire role of your group and also what could be achieved, not necessarily what could be achieved for me personally, but what generally can be achieved. So after a long discussion, we agreed that he would pass my details on to a consultant. And again, surprisingly, that evening it was all so quick. I spoke with Tim Dudderidge, who is the urologist at Southampton, who listened to my story and agreed to take on my case. Gosh that was a huge relief. Tim was so reassuring and his willingness to investigate was really fantastic. And so Tim decided he would get the hospital scan results and the biopsy notes from Torbay Hospital. Well it would have been a couple of weeks later, that Tim phoned to say that the MRI really isn’t of sufficient quality for me to use. And so I agreed with him that he would organise a new MRI scan in Southampton and he used a contrasting dye. The results of that a few weeks later were a twenty two millimetre lesion in the left of my prostate. Thankfully contained, I have to say, but very near the edge, or fairly near the edge. So prior to that treatment, Tim said, I really want to get some biopsies of that. I can’t really trust someone else’s biopsies, which I fully accept. So I popped up to Southampton again and he took biopsies, which then showed a rather different story than just pure low grade. It was Gleason seven with significant pattern four cells, which again, I said is quite different from the hospital’s diagnosis to. Tim said, I really favour treatment over active surveillance and wrote a letter to me confirming that and to my doctor. Now ironically at that stage, we were then more than three months on from the original hospital diagnosis. So I had this three months PSA test. My PSA had then risen to 9.2, but still my local hospital find that quite acceptable, not to worry at all, which I was quite surprised at. So Tim and I discussed treatment and due to some calcifications within the prostate, which Tim said was pretty, not normal, but it was it was not unheard of, many men have this. HIFU was not really suitable, which I fully understand. And so we opted for …

Clare Delmar

Cryotherapy

Michael Clay

Cryotherapy, and I readily agreed to that. And I’m so grateful to Tim because he moved heaven and earth and that took place on the 21st of December 2020 at the Spire in Southampton, which was, as you can imagine, the pandemic was just starting to really kick off quite badly. The result of that was more than I could ever have hoped for. Tim said that he had managed to ablate the entire tumour and a good margin around it. I was really ecstatic at that result, very grateful to Tim and his team, for his excellent treatment. And at this point, I must thank his PA, Kirsten, who is really wonderful at organising all that.

Clare Delmar

And that’s really, really, really good to hear. But can I just pick up on a couple of things you’ve said? I mean, your experience with active surveillance then is pretty significant because twice now you were at Torbay you were actually sort of officially treated that way. I mean, based on your experience, what would you say to men being offered active surveillance and how how can they get a better experience that you had? Do you think?

Michael Clay

Can I come back to that point? Because I just wanted to say that the next day I went home. Things were pretty good then. A little bit rough for a week. But after eight to 10 weeks, I found I’d fully recovered. I now feel as well as I did in my 50s. And of course, we passed the first of March when my PSA was taken at not nin point anything but 0.85. So not even one. So Tim was really pleased with that result. So that’s really my focal therapy experience, which I have to say to this day I find absolutely exceptional and excellent.

Clare Delmar

Good. So what can we learn from from that? And back to the Active surveillance question.

Michael Clay

Yeah, yeah. I would say, of course it’s up to each individual whether they’re happy with active surveillance or not. Most men, I think, just leave it in the hands of the urologist as to what treatment is considered appropriate. But I think I would advise to seek a second opinion, especially if they’re concerned. I understand that some early interventions or treatments have been proved to be unnecessary in the early stages. But in my case, my diagnosis was never discussed with me and no treatment other than active surveillance was ever offered, despite numerous emails requesting a consultation to the hospital. It was therefore left up to me to seek a second opinion, and I looked for an alternative treatment to active surveillance, which was supported by my local doctor. I investigated many of these treatments radiotherapy, brachytherapy and even complete prostate removal, and realised that they’re not always appropriate, particularly in low grade cancer cases. I realised that these cancers could be treated with local therapy. It appears to be a much less invasive treatment with far fewer side effects. But it seems to be rarely offered, and I do believe that so few people are, in fact, aware of it. So in answer to that question, how can men get a better experience? I think my answer would be look at all the options, including focal therapy, HIFU and Cryo. And the beauty I understand of the latter is that they can be repeated at a later date if needed. It was quite interesting and I think it’s a point that all men should consider, I eventually discovered that my tumour was at the front, the anterior, of my prostate. So it was difficult, if not impossible, to detect any abnormality through a digital rectal examination so I think my best advice would be analyse what you’re told, but always seek a second opinion.

Clare Delmar

Indeed. And in fact, I want to come back to that question about some of the diagnostic procedures, but I want to pick up on something that we had talked about previously and what you said just a few minutes ago about being offered a full range of treatments, because at one point you had told me that hormone therapy was something that was offered to many men. I think in one of your support groups, you said this was the case and you had some pretty strong views on that. And I wanted to just enquire about that. And why do you think this is happening and what would you say to other men?

Michael Clay

I suppose I have to say at this point that I don’t have a medical background, however. I believe it’s a question probably of reduced availability for all of the alternatives in many areas. Let me just say that I joined our local prostate cancer support group. And on our Zoom calls, I’ve spoken with several members who are a little bit older than me and who have been on active surveillance for several years. Sadly, they’ve told me that as their PSA has risen, indicating that prostate could have grown possibly outside the prostate. It seems that the main treatment option at that stage is hormone therapy with its horrible side effects. And I believe that this is possibly because it’s just too late for other treatments, especially if it is metastasised outside of the prostate, for those treatments to be effective. And of course, as I said, no other treatment was offered to them, especially for the focal therapies on first diagnosis. It seems to me in many areas of the country, active surveillance is the standard for low grade prostate cancer as focal treatments are not widely available. So while active surveillance may be effective for those who have a life limiting health issues, are they likely to die maybe from a known cancer related condition, for those men that are reasonably fit and have an otherwise long life expectancy, active surveillance for the patient was an organ containing cancer, followed by hormone therapy once that cancer spread, to me, doesn’t seem to have the best outcome. So in summary, my point would be this. Why would any man with a low grade organ containing cancer run the risk of it spreading while on active surveillance when it could be effectively ablated with focal therapy?

Clare Delmar

Exactly.

Michael Clay

For me, it was just it was just an absolute no brainer.

Clare Delmar

So coming back to focal therapy. You found that the imaging required to plan and undertake your treatment was considered of poor quality and had to be repeated. So I guess I’m interested in exploring to what extent do you think men are aware of, I guess, a) of how important the imaging quality and reporting is in their diagnostic and treatment pathway? And I guess, b), how variable do you think it is across the health system?

Michael Clay

Right. Yes, interesting point. I personally doubt whether any patient, unless in the medical profession, would know anything about the equipment or the quality or the reporting of MRI images. I certainly wasn’t aware that there was any difference between MRI scanners or even the quality of staff reading the scans. However, once I’d spoken with Tim, I realised how shortcomings in my original hospital MRI scan could have affected my diagnosis and the treatment and why it was so important for Tim to repeat my MRI. He actually used a contrasting dye, which I think helped. I confirm that the quality of the Southampton MRI scan and the expertise of the related staff was absolutely pivotal in my final prostate cancer diagnosis and of course, my eventual focal therapy treatment. Well, we hear that the NHS is a bit of a postcode lottery when it comes to treatment and certainly in the south west, I think generally in the UK, there, to me anyway, appear to be too few specialist centres with first class equipment and most importantly, experienced staff and consultants who can offer some treatments including focal therapy. So the NHS has gone through a terrible time recently and we must all thank the NHS for their amazing work during covid. I can only think that the trauma they’ve gone through is totally unimaginable really. But just looking to the future, this is probably something that’s got to be a governmental thing, but I believe the goal has to be to build more first class hospitals equipped with high quality equipment and staff with experience, urologists, similar to Tim.

Clare Delmar

I mean, I’m sure other people would share that view. And before we finish, there’s one other issue that I just want to touch on. Several aspects of your experience suggest that your age might have been a somewhat limiting factor in discussions around treatment options. And I mean, I just really would like to know if you feel this is the case? And do you think that there is any form of age discrimination in parts of the health service that men should be aware of?

Michael Clay

That is a very difficult question to answer with any certainty. However, I do feel age was a factor in my case. As I’ve said, I do understand the constraints that covid has placed on the NHS, which may also be a factor because I was a pretty fit and healthy 75 year old man. I was only offered active surveillance and despite repeated written requests over seven months asking for a meeting to discuss all other options, I’ve still not received a reply.

Clare Delmar

Really, really?

Michael Clay

Yeah, yeah. I haven’t. So talking about the age discrimination factor, that’s difficult from my legal background. The Equality Act 2010 explicitly bans discrimination based on age. The NHS constitution agrees a comprehensive service to all irrespective of age. But maybe the section that states access to treatment is based only on clinical need could be taken to imply there’s less clinical need to give certain cancer treatments to, say, an 80 plus year old man with other life threatening health issues, as opposed to an otherwise healthy and fit 70 year old who only has a contained low grade prostate cancer. It’s very clear the NHS is totally underfunded and now the constraints of covid and obviously the vaccine programme are probably a factor in patients not being given information about the full range of treatment options. But the reason I really felt my age was against me was when I was advised of my biopsy results, a conversation about it went like this, the consultant rang with a results of the biopsy and said, oh, good news Mr Clay, no concerns; however, we have found just a couple of low grade cancer cells, but nothing to worry about. We believe half the men over 75 had these low grade prostate cancers, never knew anything about it and never die from it. So, Poppy, one active surveillance because it’s unlikely to die from prostate cancer, you’d be more likely to die from something else at your age; goodbye. Well, you can imagine I was pretty shocked at that.

Clare Delmar

Yeah.

Michael Clay

I did not like having a ticking time bomb inside me. We don’t know if or when it’s going to develop. And that makes future planning, if you want to go on holidays and do things with the children or grandchildren, it makes life very difficult.

Clare Delmar

Of course.

Michael Clay

I do think that my generation probably has a life expectancy now, well past 80. We expect the best treatments to enrich the remaining years of our lives, which is why I believe withholding information about the different options, is a form of age discrimination, although probably not intended. And I believe that focal therapy like HIFU and cryotherapy should be available and an option for all because of their minimal invasiveness and I understand they can be repeated should be an absolute need for everyone to know about.

Clare Delmar

Well, Michael, I really appreciate your comments, I think our listeners will will find them extremely helpful as well. And I want to thank you so much for speaking so openly and so honest with me, today, it’s been a real pleasure.

Michael Clay

It’s a pleasure to have been able to have told you what’s happened to me. And I hope things will continue as they seem to be going pretty well. But I think the work that the focal therapy group and all the staff and the consultants have done is absolutely amazing. And I just hope that that will now grow and become the gold standard rather than active surveillance.

Clare Delmar

Well good luck to you to and enjoy the summer with your family after all of this.

Michael Clay

Thank you, indeed.

Clare Delmar

Further information on alternatives to active surveillance 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. Thanks for listening and from me, Clare Delmar, see you next time.

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