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Advocating for men with prostate cancer ten years on

Simon Lord

Simon Lord, personal trainer and cancer rehab specialist, is also a prostate cancer survivor having had successful robotic surgery in 2010. He joins OnFocus to discuss the changes and developments he’s observed in diagnostics and treatments for men with prostate cancer and how this impacts the experience of men he works with.

 

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 Simon Lord, personal trainer and cancer rehab specialist who is also a prostate cancer survivor, having had successful robotic surgery in 2010. He joins On Focus to discuss the changes and developments he’s observed in diagnostics and treatments for men with prostate cancer and how this impacts the experience of men he works with. Simon. Welcome. Thank you so much for joining me today on On Focus.

Simon Lord

It’s great to be with you, Clare.

Clare Delmar

Super. Well, one of the things that sort of brought me to want to chat with you is, aside from all the great work you do with men both pre and post prostate cancer treatment, is that you’ve seen some incredible changes. You’ve indeed experienced these changes over the last 11 years. And I’m really interested in hearing how you’ve seen these changes work for the benefit or maybe you’ve seen some challenges that need to be addressed. So during this period, what would you say is the good news and what is the bad news in terms of progress?

Simon Lord

I think the good news for many but not yet all men is that the pathway for prostate cancer diagnosis has definitely been speeded up and within that pathway there is more use of better technology than certainly was the case when I was diagnosed. If you go back 11 years, every man was diagnosed with prostate cancer following a transrectal biopsy. So device put up the rectums, a needle shot out through the rectal passage into the prostate. Now, some men still have that biopsy process, but it’s a shrinking number and the majority of men are now diagnosed following a biopsy taken directly through the perineum with the aid in many cases of an MRI scan. So I think what we should be seeing is fewer men needing more biopsies, but more biopsies giving greater, more accurate information to the surgeion or to the oncologist to allow them to really prescribe the right treatment.

Clare Delmar

OK, does that manifest in the men you work with that in that they feel confident that they’ve been diagnosed accurately and effectively and that the treatment is a good thing?

Simon Lord

I think so. There is still work to be done to ensure that technique is available to all men. But there’s been a significant change. Very few transperineal biopsies were being done when I was diagnosed. They just coming in and now we’re starting to see some real evidence that they work and that MRI guided biopsies work. And so I think within the next five years we will probably see the majority of men being diagnosed with that.

Clare Delmar

Yeah, I mean, it’s interesting because you say that it’s becoming more prevalent, but yet we also talked in previous conversations about how there’s still variability across the NHS and this can impact men going through diagnostics and treatment. Can you give some examples of this?

Simon Lord

That is my exact point is that this is not yet universally available. MRI scanning capacity is obviously variable across the NHS. Best practise, we should allow this to happen, but best practise isn’t yet universal practise. And until it is, there will be variability, without a doubt. But there are some other more niggling issues, I think, around best practise, we still see one or two, more than one or two sadly, a significant number of men, being put off having PSA tests by primary care, by GPs because those GPs don’t think it’s relevant. They don’t think the PSA test gives accurate information. And clearly some men will therefore receive a late diagnosis of prostate cancer and have their treatment options limited and their life limited as a result.

Clare Delmar

I mean, another area of variability, of course, is access to counselling. Do you see this having improved in the time since your treatment, both in terms of quality and quantity, for example?

Simon Lord

Access to counselling, I think is very poor indeed. I would say even now it’s very poor and I would think very few men and their partners are properly counselled in terms of treatment options, they might be given them, but whether they’re counselled over them is another matter, because counselling is not just a question of, well, here’s a piece of paper with the information on it, what do you want to choose? Tick this box, please. Fully to counsel someone about that is not something that you can do with a 15 minute session or even one or even a couple of 15 minute sessions. So I don’t think that we are anywhere close to the level of availability and the quality of counselling that I would want to see for men in that respect.

Clare Delmar

Indeed. I mean, do you think that the need for counselling is greater now than when you were going through your your treatment?

Simon Lord

Well. Not really, I mean, I guess the issue is that we’re probably seeing an increasing number of men being diagnosed younger and in that respect, do they deserve more counselling? Well, on one level, yes, but overal not really, because it’s still the same impact, whether you’re forty three, fifty three, sixty three or seventy three. So I don’t really hold with the idea that just because they’re younger, they should get counselling because that’s rather writing off the older man who for all we know might be just as healthy and vigorous as someone twenty five years younger.

Clare Delmar

Yeah, indeed. When we see this all the time and I guess we’re referring here to counselling around side effects and particularly around sexual health.

Simon Lord

The side effects are massive in some cases, but I don’t see that at the age of the patient should have a bearing on that.

Clare Delmar

I agree entirely agree. Well, I guess my question really about the side effects was, given that there are more options in theory available, that there’s more information and more potential impact around side effects. So potentially the need for more counselling. I mean we hear this a lot from patients that they haven’t felt counselled properly.

Simon Lord

It’s an eternal problem. And I think we’re certainly in a better place than we were 15, 20, 30 years ago. Maybe the NHS hasn’t really caught up with the technology because I think the NHS is still sort of based on the idea that this has to be done one to one in a hospital setting. And the reality is that actually the vast majority of this could now be done, maybe still one to one, but certainly remotely. It doesn’t need to be done on a hospital level. There’s no reason why this couldn’t be done at a regional or national level with men having access to the type of counselling they want to have, not the one size fits all that the NHS wants to put at them. So that there would be an opportunity to have counselling done, still very effectively, but remotely, rather than someone having to travel to a hospital to have that take place.

Clare Delmar

And in a previous conversation we had, you talked about how funding and awareness for prostate cancer is actually very small compared, for example, to that for breast cancer. And I’m wondering why you think that is and why you think it’s important.

Simon Lord

It’s always difficult in a situation like mine to not to be seen to be complaining about another tumour’s funding. I don’t want to complain of that and say, well, breast cancer gets ten times the amount of prostate cancer. And that unfair. Because that is a very negative statement, albeit true. You’ve got to remember that breast cancer has got a lot of history, breast cancer obviously has got a lot of high profile patients and advocates going back across years. Breast cancer has got a remarkable profile really because if you believe the publicity, you would believe that most women are diagnosed with breast cancer in their in their 30s or 40s, relatively speaking, in their prime, but the truth of the matter is it’s just like all cancers is actually a disease of getting older and that most people diagnosed with breast cancer are over 50, in the same way that most men diagnosed with prostate cancer are over 65. But the breast cancer campaigners have been very effective at what I would call, and what you would understand as, linking breast cancer to apple pie and motherhood. And making it or the support of it, obviously not the disease itself, but making it glamorous to support breast cancer.

Clare Delmar

That’s interesting. Yeah, I can see where you’re coming from on that. And you’re quite right. We don’t really hear about men in their 40s

Simon Lord

And we don’t hear about men in their late 40s and 50s being diagnosed with prostate cancer. Very, very recently, a smaller number of what the media would call celebrities have come out with the fact that they’re being treated for it. Actually, I have a problem with that, too. But I’ll tell you about that in a second.

Clare Delmar

Are you referring to like Stephen Fry and Bill Turnbull is that kind of what you’re thinking?

Simon Lord

Well, Stephen Fry is an interesting example, but I would say well, actually, I think but the flip side of their being open about it is that it does bring more awareness to the topic. Bill Turnbull particularly and Stephen Fry also. Obviously both very well known in the entertainment and a broadcasting sector. And so they have a big audience, but if say they’ve been able to get more men in to be checked for the possibility of prostate cancer, then that’s clearly a good thing. The flip side of it, however, is that what it’s actually also shown is that there’s been a reduction in my 10, 11 years of advocacy of the press wanting to talk to Joe Average about prostate cancer because we’ve now got celebrities who are happy to talk about it. What, of course, you don’t hear about celebrities is that clearly they’ve already got a significant income. In some cases they’ve got a book or a show to sell. And almost without exception, they’re being treated privately. And so their prostate cancer isn’t actually the same as my prostate cancer. My prostate cancer was diagnosed on the NHS. My prostate cancer prevented me from working. My prostate cancer didn’t give me a book or a stage to stand on to talk about it. My family were worried about my income and my future health and the impact on the family as a result of that, because I’m the only earner in my family, whereas in the case of the celebrity prostate cancer survivors, none of that is an issue.

Clare Delmar

Yeah, indeed.

Simon Lord

And so I think there’s been a bit of a skew away from the man in the street talking about his prostate cancer towards the celebrities, which ultimately I think is disappointing because it makes it sound that actually prostate cancer probably isn’t too bad because you can throw money at the problem. Now, obviously, in the case of Bill Turnbull, we know actually his prostate cancer is advanced. No amount of money will save his life. But he still has significant advantages over a man with a manual job and no big savings behind him.

Clare Delmar

No, indeed. So drawing this to a close, I guess I’d be really interested in your views on what you would say to newly diagnosed men and men going through treatment, who I guess you engage with pretty regularly in both your advocacy and your rehab. What are your top three pieces of advice?

Simon Lord

My first and most important piece of advice is read around the subject. Make sure the treatment you’re having is the treatment that you’re happiest to have. And if that means having a second or even a third opinion on your situation and the treatments available and the likely outcomes, then do it. I took the second opinion and it undoubtedly changed a great deal of things for me. I guess the second thing is find other men in your situation to talk to. They will be your greatest supporters and will comfort you in ways you didn’t believe possible, despite the fact that they might have been strangers 10 minutes or more ago, you know? There is a huge and very positive energy out there for men going through what you’re going through, find that energy and draw from it because it will carry you through. I think that’s really important. And I know I did that, and that’s a large part of why I do what I do. I want to feed back some of what I was given and I will never finish. Because you’ve always had more than you can give.

Clare Delmar

OK.

Simon Lord

And the third piece of advice, which I rather would say wouldn’t I, is if you’re not already fit, get fit. And if you don’t know how to get fit, find someone to help you get fit. Because the fitter you are, as you go through both diagnosis, treatment and recovery, the better your future life will be.

Clare Delmar

Simon, I want to thank you very much for speaking with me today, it’s been an absolute pleasure. You’re quite an inspiration for a lot of men and their families. And I want to thank you once again for coming today.

Simon Lord

My pleasure. I look forward to catching up with you in due course.

Clare Delmar

Further information on standards of care and diagnostic procedures 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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