Elvin Box: on a mission to eradicate the taboos faced by men with prostate cancer
Elvin Box, a popular and passionate advocate for men with prostate cancer, returns to OnFocus to discuss the Movember campaign which began earlier this month. 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. Today he talks about his mission to eradicate the taboos faced by men with prostate cancer. Movember UK:https://uk.movember.com
Clare Delmar
Hello and welcome to OnFocus, 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 the most commonly diagnosed cancer amongst men and in the UK, and with this number 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 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 to discuss the Movember campaign, which begins next week and his mission to eradicate the taboos faced by men with prostate cancer. Elvin, it’s wonderful to have you back on the programme. This is our second time and I’m so excited to chat with you again. Thank you.
Elvin Box
Thank you for the invite. I always like talking with you anyway, so to get to record it and to be talking about something that I’m so passionate about, very pleased to be given the opportunity. Thank you. Thank you so much.
Clare Delmar
Very timely because of next week. So let’s start by talking about Movember, and maybe you could just tell our listeners a little bit about your role with Movember and most importantly, how you see the organisation and its campaigns making an impact.
Elvin Box
Sure. As you well know, I was diagnosed with prostate cancer in the June of 2016, operated later in August 2016, and on returning to work, I was then working in the corporate world and since early 2017 and I was asked if I would speak to lovely people from Movember who had come in to talk to somebody about Movember. And from there we had a wonderful discussion and we spoke passionately about my experience with prostate cancer and we were aligned completely.
Clare Delmar
Okay.
Elvin Box
And then they showed me the DVD clip that they put out the year before as their campaign, which was to do with suicide prevention. And within 30 seconds of it starting, I was wailing, crying my eyes out and through the tears to keep playing it, it was around two minutes. When it was finished, I managed to get myself together. I said, I’ll do anything for you, anytime, anywhere. What do you want me to do? I did explain that I’ve had prostate cancer and I’d survived. Two lifelong friends took their own lives. It left a deep imprint on me until I meet them in the hereafter. So that’s why I Mo, as they say, I’ve now come through well and truly prostate cancer, everything it can throw at you. I’ve understood my way through it, but it’s a physical thing. Did not understand the mental thing till it whacked me through the head. But that’s what I do these days. Like my shield and the sword. I’m out there to smash prostate cancer and so it never kills and in the process it never takes men’s mental health as well. Does that help, Clare, give someone the impression of why it is I Movember? And Movember is obviously all about prostate cancer, testicular cancer, mental health awareness and suicide prevention. Three key things that mean that men depart from this wonderful Earth earlier than their female counterparts, sometimes up to six years. Although there is some interesting research that says that 20% to 25% of men in the UK will not make it to 65.
Clare Delmar
And the impact that Movember is having is it mainly through awareness raising and various events? Or can you specify something that you have particularly been impressed with in terms of impacting men?
Elvin Box
So Movember is global, seeks to raise as many dollars, pounds and any other person’s currency as possible. That money is then towards innovative programmes and research, all in the bid to reduce the impact the three causes are taking upon men, specifically the mental health situation, because they’re trying to knock that down by 25% by 2030.
Clare Delmar
Okay
Elvin Box
Because that’s like one man a minute. Every minute a man will take their own life across the globe. And it’s well known… it’s very very sad that this week, Michael Tyler, wasn’t it, the American actor passed with prostate cancer?
Clare Delmar
Yeah. He played Gunther on the show Friends. I think we all remember him.
Elvin Box
Yeah, lovely guy. And he’s been deeply moving because the video clips out there, you can see the agonising death he had. And so what Movember are all about… This is why I’m behind it… Is going to stop men taking their own lives. Got to do something about prostate cancer. Hence funding putting millions into research into the diagnosis of prostate cancer.
Clare Delmar
Okay.
Elvin Box
And.. and Dum dum dum, drum roll, have big enough cahoonas to let me talk in public through their media and they actually support me talking about the taboo.
Clare Delmar
Yeah, well, that’s what I wanted to get on to next because you’ve had quite an impact. And I wanted to ask you how you and the campaign address what you and I have talked about this. I often call them the big three taboos around prostate cancer, which are not in any particular order, incontinence, sexual dysfunction and mental health. How do you address those?
Elvin Box
Personally, head on. Parental guidance on this. Whenever I do any public airing of it, I do let them know that I am candid. I said it’s adult talk. It may be nine in the morning, but I do not sugar the pill. And so I actually ask everybody, is there anyone in the room who has suffered with prostate cancer? Someone currently knows someone with prostate cancer or is going through the diagnosis. Please be aware that I will tell it as it is. So I get the full backing of Movember on that and everybody who hires me in, knows that’s what I’m going to talk about. I openly ask and almost beg, please bring in every gender possible, because it impacts everybody. Everybody knows someone with a prostate. Everybody loves somebody with a prostate. And there’s a very high chance that this is going to happen. I do everything I can to say to people, explain to people that if you look at in three ways, it can hit you. Prostate cancer can attack you and you can catch it nice and early, which you well know about. You know all about that and the earlier it gets caught, the less damage it does. Eminently curable on that first one. If you can catch it early enough, it’s eminently curable. Didn’t hit the walls of the glands, is eminently curable. Okay, it hits the walls, the gland, it’s aggressive. It’s still curable. It went through the gland and attacked the bones. It’s not curable. I’m ever so sorry. It’s not curable. It’s just a matter of time. That one over there. And I want to try to explain to you now the impact it will have on… And here we go… There’s the big three and in no particular order, your continence, your potency, your ability to get and maintain an erection and how it affects your mental health. Cross the three. The worst of the lot is when it’s got out into attacking your bones. All three are turned up like volume eleven.
Clare Delmar
The other thing I wanted to ask about the big three is we’re calling it, is sometimes, well, not sometimes often these big three side effects, which we’re calling taboos, just because no one likes to talk about them. And we’ll talk to them a little bit later about why that’s the case. But often they’re a side effect of treatment. So, yes, what you just said is absolutely true that as the prostate cancer develops and advances, sadly, those three effects will manifest, but equally, they can manifest with treatment.
Clare Delmar
And so, is that something you talk about, too?
Elvin Box
Most definitely. I touched upon it in the last campaign. I do talk about this outside the campaign. One of the organisations… they don’t have to drag me, I run there, and I will open up, and this campaign there’s a big bit about you do recognise the fact is, the earlier you catch it, the less damage that is caused in actually removing the tumour. We don’t catch it. We don’t remove the tumour. Right. So that’s why it’s so damned important. I’d really impress upon people is that if you catch it and it hasn’t hit the walls of the gland. If that tumour is eminently curable, and that means you will do little, I can’t say none, but you’re going to reduce dramatically the impact of the rest of that person’s body, physically and mentally. If the tumour is aggressive, you’re going to have a hell of a funfair ride afterwards.
Clare Delmar
Yeah. So we know that lots of men and their loved ones have suffered because of these taboos. And again, it’s important to distinguish, how they’ve manifested. And it is often from treatment. And I wanted to focus on that for a second because what I’m really interested in is that often in the case with treatment. And indeed, often the case if they hadn’t been caught early. Back to your point, their quality of life would have been improved if there had been simple and straightforward information provided free and post events. And so I guess my question to you is, from your experience, how have these taboos been handled within the health system? Do you think men are just uninformed? Is this the root of this, or does it go back to something else that you’ve experienced personally and through your campaigning?
Elvin Box
That’s the question. That’s brilliant. As you will know, I talk online and actually on Zoom calls too, to learned people at various universities and the great guys out there who have suffered like me. So taking all of that in, it’s not just me like thinking about it, one individual, but all that information. We as a nation in the United Kingdom and I’ve not heard it from elsewhere, do little or nothing to explain what we mean by impotency and incontinence. That information, that education should come way before you are diagnosed with prostate cancer, because there’s such a high probability during your lifespan.
Elvin Box
If you’re lucky enough to get to 80 and you were born with a prostate, there’s an extraordinarily high probability it will be attacked through cancer.
Clare Delmar
Well, it’s one in eight as we know in this country and one in four if you’re a black man, you know that too.
Elvin Box
So the impact on your potency is that, well, you won’t be able to ejaculate anymore and you’ll not be producing any semen anymore. Now, what I just explained is everybody should be told that because they do err on the side of caution, anything with medical professionals, God bless them. When it comes to prostate cancer, they say it’s too complex, we can’t tell you. Nonsense. There are certain things that will happen regardless of how you are treated and what stage the treatment was and how well you faired up. There’s things that are just going to happen and that should be made clinically clear before you go anywhere near it.
Elvin Box
Indeed.
Clare Delmar
What are the messages you’re getting from the men you talk to? Are people saying to you that they just didn’t know? This is what I hear a lot. So I’m wondering if it’s the same with you.
Elvin Box
It’s almost mentioned in passing, and it’s very much dependent upon who is going to undertake your treatment. With all due respect to all of them. It’s very inconsistent to use the Queen’s English, too inconsistent, far too inconsistent in trying to explain to the person who’s going to have the treatment, the extent of their incontinence and the extent of their impotence and the extent of their mental health, which is rarely mentioned. At best. You’ll be having a discussion with someone who is honest enough to say it depends how well I treat you, because if we get it up front and we can do something as early as focal therapy and that can be explained.
Elvin Box
And that is one of the key things that is explained, we have got a far, far greater chance of reducing impotency. In other words, you will get an erection like you used to do, which then leads on to the next bit. Okay, so you’re going to have to have a form of treatment because it’s aggressive. There’s a lot of emotion starting to seep out through the likes of myself. Don’t forget to tell the people how strong were your erections before you got prostate cancer. That’s number one. Number two. Be honest, the person who’s going to do… Let’s talk surgery first. Well who is going to do the surgery? How do you see this coming out? Talk about percentage chances, talk about duration. Not enough people talk about that. What do I need to do to get back erections? Give me the instruction manual. With the amount of technology out there on YouTube, can’t someone do that. One like the NHS. Just get your act together.
Clare Delmar
So I don’t discount the importance of raising awareness. I think that’s something we’re all doing quite consistently, as you say, quite passionately and particularly starting next week with Movember campaign. But other than raising awareness, what do you think can be done to ensure that all men who are diagnosed with prostate cancer understand how these issues may affect them and that support is there if they want and need it.
Elvin Box
If we take them the vast majority through the NHS. I love the NHS. I am the very proud son of a nurse, but Matthew Syed said this the other day, didn’t he? We’ve got to let the Halo slip. They’re an organisation and look NHS. You’ve just got to do something about informing those who are diagnosed with prostate cancer. Let’s explain to people in very clear stuff. This will definitely happen and this may happen, which is that may happen. Is it may happen. For instance, you will have a shrinkage of your penis if you go one route, one straight route through a prostatectomy. Now it all depends on the strength of your erections previously. So if you have a prostectamy to me very much depends on the strength they were before. It also depends upon how close they need to get to the tumour and the nerves. That nerve sparing. All important. By the way, we’re now going to tell you what best practise means for your penis rehabilitation, for want of a better term, because I found out by osmosis and that’s five years on. I can now explain that you can do a tremendous amount by getting yourself fit again.
Clare Delmar
Physically fit?
Elvin Box
Physically fit. If I’d only known this in my 40s. What the difference between fit is and when you’re breathing. Yes, I dedicate myself. I have a very dedicated regime, but it’s paid off. Yes, I call it the resurrection because with relatively normal means, ie, I take five milligrammes of Cialis on a daily basis and without Viagra and without an injection, but with love and affection, I can now get an erection. There you go.
Clare Delmar
Yeah well, that’s good news.
Elvin Box
That’s the information that I needed readily available five years ago.
Clare Delmar
And is that what Movember is doing is trying to really reach the unreachable and try to get men to see that this is important?
Elvin Box
Absolutely. There’s a lovely little video of myself and other men. Their quality of life has been somewhat disturbing because we had our tumours removed, but because it was diagnosed at such a late stage. In this day and age, it should be diagnosed then. It’s horrendous. And I’ve got huge respect and thanks that my surgeon did a brilliant job. And I mean brilliant. Yeah. Absolutely. Phenomenal. Exceeded his expectations and mine. My continents and my potency almost back to as they were, which is phenomenal.
Clare Delmar
It is, it is. And you were very lucky.
Elvin Box
This has so much to do with that person’s health. Right across the board, specifically their mental health. That was the one thing no one told me was coming like that.
Clare Delmar
Yeah. No. You’ve done an amazing job. And that’s why I really wanted to bring you out today and push this out. And I will also share the video that you just referenced, too, so people can see that. And I think the more that you get that message out there, the better for everybody. So thank you so much for what you do. And thank you once again for coming in and chatting to On Focus.
Elvin Box
Thank you, Clare, for all the support you give me and the prostate cancer community that is out there online. You know the guys well. We can only thank you from the bottom of our hearts for giving us the voice and for projecting on a regular basis the challenges because someone’s going to have to listen soon because we’re going to be banging down their door.
Clare Delmar
No, indeed. It’s a wonderfully disruptive community.
Elvin Box
Absolutely.
Clare Delmar
Thanks again. And I look forward to our next chat.
Elvin Box
Me too. And thank you once again, Claire, you’re brilliant. Thank you so much.
Clare Delmar
A transcript to this interview with links to Movember and Elvin’s video of him discussing these issues with other men are all 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.thefocalthrapapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening. And for me, Clare Delmar see you next time.