Elvin Box, a popular and passionate advocate for men with prostate cancer joins this episode of onFocus. Diagnosed in 2016, Elvin is a Movember UK ambassador and has written and campaigned extensively on a number of issues impacting men and their families as they experience a diagnosis of prostate cancer and navigate treatment options. He’s here today at the end of Men’s Health Week to share his perspective on men’s health awareness and how prostate cancer fits into this.
Movember UK: Changing the face of men’s health
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 prostatectomy cancer that are little known, less understood, often avoided, or even ignored. Prostate cancer is 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 Elvin Box, a popular and passionate advocate for men with prostate cancer. Diagnosed in 2016, Elvin is a Movember UK ambassador, and he’s written and campaigned extensively on a number of issues impacting men and their families as they experience a diagnosis of prostate cancer and navigate treatment options. He’s here today at the end of Men’s Health Week to share his perspective on men’s health awareness and how prostate cancer fits into this. Elvin, welcome. Thank you so much for joining me today.
Elvin Box
It’s an absolute pleasure, absolute pleasure. Thank you so much for asking me to come along. Such a beautiful day.
Clare Delmar
It is a beautiful day. And so we’ve been very, very lucky, and the whole Men’s Health Week has been beautiful and warm, so maybe that portends well for the future of Men’s Health. So let’s dig in. As I said to you earlier, I really wanted to do a podcast around Men’s Health Week, and you were the star candidate for having this conversation. What do you think are the top issues that merit attention as this week draws to a close? I mean again, I’m referring to Men’s health.
Elvin Box
Men’s Health. The fact that really the one statistic that made me sit up was that apparently in the United Kingdom, one in five one in five men do not reach 65 or they’re dead in and around 65, which is in this day and age is absolutely horrific.
Clare Delmar
It really is. Is that coming from the office of national statistics? Where did you see that?
Elvin Box
This was actually from the group that actually put together the Men’s Health Week, national Men’s Health. I’d spoken with someone at Movember about this. Globally, the statistics say is that women outlive men by eight years, which we would know is well, that’s horrific. That’s a long time, eight years. But to the general population especially, when you talk to a 35 year old that doesn’t really carry much weight. Okay, but what I actually now say to them is though, that one in five of you in this room now, if you’re all guys or sorry ladies, but you’re going to last a bit longer, one in five, you’re going to have gone before you reach 65.
Clare Delmar
Yeah.
Elvin Box
Anyone here? 55, you just got another ten years. That was the the thing that kicked me in and yeah, and I’ve still tried get the bottom of why is there is such statistics? There are such things, but the thing that still nags at me is we’re not doing enough about mental health, which leads to suicide. And as you well know, Clare, we’re way off the mark in doing something nationally, just of making sure now we really get this prostate cancer thing. We really get this. You don’t have to keep telling us that on any normal day, probably every 15 minutes, a man will be diagnosed with prostate cancer. And as we well know, Clare, probably every 45 minutes, one will die. And the sexual health outcomes for the majority of men, we can talk about it in a bit more detail, but the majority of men, if they have any treatment for prostate cancer, their sex life and of course, their social life, because basically most of them will become incontinent to a lesser or worse degree, some quite bad.
Clare Delmar
Indeed.
Elvin Box
And as we both know, is that, very sadly, their potency is for many men, will never return.
Clare Delmar
Yeah.
Elvin Box
So, sadly, we’ve still got to do more on prostate cancer.
Clare Delmar
Absolutely.
Elvin Box
…Of all the things in men’s health.
Clare Delmar
Yeah, no, that’s I mean I mean, first of all, I think you’re right. I mean, I think any of our listeners would also sit up when they heard the statistic of one in five or 20% of men in this country won’t live beyond 65 and just on its own. I mean, I’m sure if you dig deep and unpack some of that, you’ll find variation amongst localities and all kinds of other things, but it is an alarming statistic. So I do want to come back to that and I do want to come back to the specifically on the prostate cancer. But I just want to ask because you’re out there and you’re out there with Movember and I know you do a lot of work with various companies and organisations. You go in and you give awareness talks and I’m just wondering, do you find that men are more or less informed about their health, say, in the last five years? Are you seeing any trends and just a sense of self awareness about health and then presumably lead to better action about their health? What do you see there?
Elvin Box
I think that there’s more general awareness. There doesn’t seem to be much more action. There’s a lot, lot more talk, Clare, loads more talk, which is good. That’s a good start. But to fully answer your question is, that is insufficient action and also the action that will provide the support and assistance that’s needed to improve men’s health. When talking mainly our men audiences, because I talk about prostate cancer so much, is that their understanding of prostate cancer is in and around the same, which unfortunately is pretty dire, apparently, Prostate Cancer UK, said 74% of men are unaware of what the prostate does.
Clare Delmar
Yeah, that was the campaign I saw that Prostate Cancer UK was running this week. I agree, that’s pretty shocking. So let’s dig in on prostate cancer awareness and health literacy. You use that term. So, yes, that figure about even knowing what the prostate is, where it’s located, its function, et cetera, et cetera. So we know that that’s bad, and I do want to get your thoughts on how we might improve that. But I think what I’m really interested in, and this kind of circles back to what you said earlier about some of the bigger implications around sexual health, urinary health, mental health. Do you think men are sufficiently informed about their treatment choices? So that’s another question that takes it a level deeper.
Elvin Box
Unfortunately, they have no idea. The only time they even have an inkling of the treatment options available is when they’ve been told, we’ve got to treat you. That’s just a sad fact. Before they become embroiled which is a word I would use with prostate cancer, they have little or no idea of the options. And when options run out. It’s a sad fact, is that there’s lots of people who know someone who’s got prostate cancer, who’s died of prostate cancer, or living with prostate cancer. But I’m not sure if it’s the complexity or not, I’m not sure because it is so complex, but I’m pretty damn sure there’s not enough easily available material to set guys up and on their way, as there is with breast cancer. Breast cancer has screening, of course.
Clare Delmar
Yeah, we can even come on to the screening issue. But I’m really curious about the point you make about information because, I mean, I would actually argue that there’s overwhelming amounts of information and the issue is more the quality, not the quantity, perhaps.
Elvin Box
No. Clarity. Clarity. And it’s still too complex. It’s still too complex. What is out there is still too complex and it’s insufficiently. Insufficient, I’m being polite. Nobody really understands that if you are diagnosed as early as possible, there really is minimal invasive treatment. Now, give an example, Clare. In around about 2018, not long after I started doing these talks, I was at one session and this guy actually said, look, in comparison to Elvin, he said, I broke my finger nail because he explained what minimal invasive treatment he’d had and he said it was caught earlier. So he said he explained to everybody, I just woke up by morning and I did a wee, but nothingm, but there wasn’t any wee there. And he said, I didn’t wait to see if it went in the afternoon. The first person I went and spoke to after that was the GP. He said, it was the best thing I ever did because it was prostate cancer. It was stage two. It was still within the gland in comparison to Elvin. He said, I had nothing done.
Clare Delmar
What you’ve said is quite salient because first of all, he was lucky to be able to see a GP. Sounds like it was almost immediately or certainly very quickly. Which actually kind of leads me to another question. Do you think that the cancer backlog that’s talked a lot about in the media. I’d like to hear from you what the people you engage with say, do you think that’s impacted men in some of the regards you’ve just described? For example, awareness, secondly, around catching this cancer in time for less invasive treatment?
Elvin Box
Sadly, yes, well and truly, yeah, absolutely. The reasoning is that prior to the COVID situation going into lockdown although lots of GPs weren’t that brilliant when they first spoke to a patient who walked in and wanted to know about potentially prostate cancer or they were advised to have the blood test. At least they were being seen. Their blood was being taken and they were actually, face to face, being spoken to. Yes, they were indifferent, the information they got, but at least they were on the first rung of the ladder. They were on that conveyor belt, they were there and they were talking about it. And then although they were being given options at least to get the ball rolling. And sadly, what happened with lockdown is that it’s made life so difficult to have a face to face discussion with a GP.
Clare Delmar
And how does that impact men? Because presumably you could get that virtual, that online appointment. Why would that matter as long as you were going to progress with, say, a PSA test, why do you see that as being such a problem?
Elvin Box
When you’re speaking with someone face to face it’s 1000 times better when you talk about something like prostate cancer than it is online.
Clare Delmar
Yeah, of course.
Elvin Box
For instance, my own case, this was before lockdown, but I’d been to see a GP two years previously when I came back with a raised and elevated PSA, all he wanted to do was to actually decry the use of a PSA. But when I went the second time, two years on, change of GP, and I explained it’s elevated, it’s not a problem, is it? And that’s when it took a discussion and I had to see her actually stamp her foot and said, you must go and see, said, I can get you to see a urologist, you are on private health. And it’s that immediacy. And not everybody’s comfortable talking online. It’s probably easier to dismiss things online. With all due respect to all the GPs out there, it’s almost like the partially sighted leading the blind. The person on the end of the call, the patient will probably know next to nothing about prostate cancer. And I’m not decrying GPs, but the majority I’ve met aren’t sufficiently antagonised by the situation to get to the bottom of something. And I get so animated when I hear that they said, oh, they wanted to tell me about the problems with the PSA, which they really shouldn’t be doing anyway.
Elvin Box
It’s advisable. Why? Because it’s the only way we’re going to find out if there is potential. Even then, it’s only potentially, but if we don’t do it, we’re never going to know.
Clare Delmar
So that raises a really interesting point. I mean, I didn’t want to get into a whole discussion about screening, but you’ve raised a really interesting point that we live in a world and I’m sure you saw there was some media reporting just in the last week or so about that asking for a PSA should be stopped. I think you saw that piece. And what’s interesting about that is, do you think that, first of all, there’s going to be a lot of men that will be reluctant to ask just for all kinds of reasons, but do you think that let’s assume there’s a certain proportion of men that are just simply reluctant to ask. Do you think that that proportion would be even greater because they’re, A, reluctant to ask, but B, even more reluctant to ask online versus face to face? Do you think that has anything to do with the current process we have for PSA screening?
Elvin Box
Yeah.
Clare Delmar
You do? Do people tell you this? I’m really curious about that point.
Elvin Box
What I get told is, especially by people who come in, and I’ve been speaking with them at a presentation, and it’s still alarming the amount that we’re told, that they’re either put off having it or this whole thing about the problems with it. And especially when I’ve explained to them that without a PSA, diagnosis can’t go any further forward. Even with the PSA, there’s an element of guessing game. I said to every single one of them, if it’s up and it’s elevated, you’ll have another one. They’ll do that as a matter of course. And so, yes, unfortunately, because the myths that surround prostate cancer, the myths that surround PSA it’s extraordinarily difficult for the average Joe, with all due respect, has never looked into it and has in his GP.
Clare Delmar
I was going to ask you about that. What do you see in these groups? What are some of the myths that you see prevalent amongst the men that you engage with?
Elvin Box
The one that stands out the most? It’s an old man’s disease. And then I say, what is an old man?
Clare Delmar
Yeah.
Elvin Box
What do you mean now by an old man? When do you go from being a young man to a man to an old man, what happens?
Clare Delmar
And what did they say when you ask them? Do they have a ready answer, or are they somewhat confused?
Elvin Box
No, some will say 65. I said, well, when you mention a various actor but they’re 65. Yeah, they’re having children at 65. That one particular one. Is it’s the old man’s one? This is a two way thing, is that I’ve heard you’ll die with it, not of it. And it’s also one that backs it up, is that it’s not that serious, is it?
Clare Delmar
Yeah.
Elvin Box
If you do get it, it’s not that serious, is it? And so at the moment, they’re all saying it’s old men. Don’t worry. Don’t worry about that. Christ. And the second thing is, well, if you did get it, you’ll die of it and sorry, die with it. And anyway, it’s one of the better ones, isn’t it?
Clare Delmar
And you still hear that these have been in currency, so to speak, for quite some time. And it sounds, for what you’re suggesting, that they really haven’t died. If anything, they’ve kind of reinforced themselves.
Elvin Box
Yeah. Unfortunately, Clare, nobody, me included, is interested or concerned is a better term, concerned about prostate cancer until it actually dawns. It’s there. I had an interesting discussion with a guy, very, very sad. At 56 last summer, he was diagnosed with incurable prostate cancer. 56. And he was bitter is not the word. Since he was 50, he had to go and see his GP on a regular basis for another blood test, for another ailment. And he actually said to the GP, said, you’ve waited six years to give me a PSA.
Clare Delmar
Yeah.
Elvin Box
Why was that? I was coming in to have regular why didn’t you just add it on? And he’s right. And very sadly, I knew a guy who died at 56. It was only eight months from diagnosis, because he was a guy, when he explained to me, I said, but what was the PSA? It was in a thousands he said, in the thousands.
Clare Delmar
Wow. Yeah.
Elvin Box
And he’d never been.
Clare Delmar
Yeah. Well, I mean, I guess I would like to finish on something, if possible, more positive, because you are a very high energy person, and you literally meet hundreds of people every year around this particular topic. What’s the good news out there? What has changed in the years? I know you said 2018, so you’ve been at this for five years. What’s improved? What’s the good news?
Elvin Box
If you talk about it in general, talk about it in general, but that’s men’s health in general. There is positive signs are that if somebody smokes now, you’re not going to know unless, for instance, Clare, there was a time when people just get the cigarettes out and put them on a desk. It never happens anymore. And so there’s a stigma about smoking. That’s for absolutely certain. The mental health issue let’s put mental health issue specifically for men, specifically those in construction, everybody knows, but statistically, every day, two construction workers take their own life.
Clare Delmar
Is that true?
Elvin Box
Yeah. The other statistic is that in Ireland, 50% of suicides are from the construction sector.
Clare Delmar
That’s interesting. I just insert for our listeners that Elvin Box is a professional in the construction sector. So that’s why, you know your onions on this one. So that’s that’s incredible. Gosh. Okay.
Elvin Box
Anyway, so positively yeah. Now you really shouldn’t be smoking. That’s coming across loud and clear. I now people still smoke, people do vape, but at least they’re understanding that it’s not very good for you, is it? The mental health thing is being talked about way more than it has been. There is an acknowledgment we need to do something about it.
Clare Delmar
Right.
Elvin Box
We’re not quite a tipping point yet to actually be doing something real and action plans in place that’s not quite there.
Clare Delmar
Yeah. And as you say that the stigma has been reduced I mean you said that about whereas the stigmas increase for smoking. Just the reverse for mental health,
Elvin Box
Absolutely yes, it’s okay to talk about your mental health. It’s not a good idea that lets owner know you still buy 20 Marlboro or other brands. And the biggest positive is the amount of more people, especially male who go into a gym.
Clare Delmar
Right.
Elvin Box
On a regular basis. On a Saturday when I go into the gym. There’s a lot of people in that gym of all ages and of all different proportions and stuff. And so one thing that came out of the 2012 Olympics, the legacy was that locally we would have a beautiful sporting village and that’s thriving on Saturdays, loads of families there.
Clare Delmar
Right. Okay.
Elvin Box
Definitely come on and talking to the groups, there’s a lot more about how they look after their health. We still haven’t got any further forward with the amount of time people spend at work and we’ve not improved the talking when it becomes intimate. When it becomes intimate. So the sexual health problem for prostate cancer, it’s still not something people like to talk about. There’s more awareness but the clarity that we seek to the extent of how things actually are impacted. And that’s why every time I do a prostate cancer talk now is that when I say I’m going to talk beyond stage two now and I want you to understand this is not happy listening or reading. I’m not over egging it for you. I’m just telling you as it is and so that part good thing is that they are okay now I get what you talk about but still need we’re not quite on tipping point there because I mentioned it before Clare, but what I want is people to talk about their sexual health as easily as they talk about their dental health. Obviously bot in front of the children and stuff like that. We’re adults for crying out loud, please start talking about sexual health just like you talk about your dental health.
Clare Delmar
Absolutely. And it doesn’t help that I think you had a more integrated approach to even your clinical care that bringing in a sexual health counsellor, a psychosexual counsellor would add so much. And I know you and I have talked about this before and we know that there are people out there who are trying to do this, but resources are constrained and they’re stretched.
Elvin Box
Yes.
Clare Delmar
And it’s people like you that are if you don’t ask, you don’t get that you’re actually raising the point that you may need some professional help on this or some kind of group to help. And I think you’re right, it’s just plugging away. You cited the example of smoking. Well it took a long time. You cited the example of mental health, destigmatisation of that. It took a while, it’s still a road ahead. But this is almost like the next frontier, right?
Elvin Box
Yes, unfortunately. But it is as you know, Clare, is that it will take people, do I say, like me, the advocates who are prepared to be shot down? Yeah, I know they have passion for it. There’s a fighting chance in the next five years, we will start to see some breakthroughs.
Clare Delmar
Well, let’s hope. But I think we’ll leave it on that note because it is positive and we’ll pick up again maybe in a future podcast back to where we are in the sexual and urinary health, because I know you’ve been very committed to that, as have we at the clinic. I just want to say thanks again so much for joining me, Elvin. It’s always a pleasure to talk with you and to get your insights and just transmit some of that wonderful energy you have. So thank you again.
Elvin Box
You can ask me all day, every day because I love talking with you. The feeling is absolutely mutual. I get energised by talking to you, Clare. And really importantly, we’ve been talking about something we know needs to change. We’re not nagging, we’re explaining.
Clare Delmar
Yeah, absolutely. And we’re incentivising. Maybe that’s another word.
Elvin Box
That’s a great term.
Clare Delmar
Thanks again. A transcript of this interview and links to Movember are available in the programme notes on our website, along with further information on diagnostics and treatment for prostate cancer 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.