This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now. This episode, I spoke to Richard and Stuart, two men with breast cancer, and in fact, the first men I have interviewed for this podcast. Richard is 10 years on from his breast cancer diagnosis and Stuart is actually celebrating 20 years. That is reflected in the hope that I got from both of them in this episode. They're both involved in something called the Men's Virtual Meetup or VMU, which is a meet-up group where men can talk either online or in person about their experiences with breast cancer. I really, really hope that lots of men listen to this episode and of course women too and I hope if you are a woman listening that you will share it with some of the men in your life and I really hope you enjoy it.

Today we're talking about breast cancer in men. Although most breast cancer is diagnosed in women, around 400 men are diagnosed each year in the UK. Most men are diagnosed over the age of 60, but younger men can also get breast cancer. Because of the lack of awareness of breast cancer in men and because of societal preconceptions, having breast cancer as a man can be quite isolating and lonely, but there is lots of support available and we hope this episode will provide a bit of comfort too. If you know a man who's been diagnosed with breast cancer, you might want to share this episode with them or you could also talk to the men in your life to see if they're aware they can get breast cancer and that they should be checking their chests. We have two guests today, Richard and Stuart. Richard was diagnosed in 2015 at the age of 58. Since then, he's been involved in lots of initiatives with Breast Cancer Now to support other men with breast cancer. Stuart was diagnosed in 2005 when he was 36 and he sadly now lives with secondary breast cancer. He has an amazing story having made history as the first man to receive the drug Herceptin on the NHS. Richard and Stuart, welcome to the podcast.

Hello. Thank you.

Thank you. Hi.

Richard, let's start with you. How did you come to be diagnosed with breast cancer?

Well initially I felt a little strange lump under my left nipple. Having been a runner for a fair amount of time I was thinking it's jogger's nipple, you know, a little tenderness that when you run in rain these things happen. And I thought that's a little odd and kind of... felt round a little bit and I kind of felt like there was two nipples. You know, lump just to the side of the other one. And I thought, better go and check it with the GP. The reaction was, okay, it's probably just a cyst. Go away, come back in a couple of weeks if it hasn't gone. First error. That was in the September, so I left it until the end of November before going back. It's not gone away. And I was sent off to the breast clinic, had the usual mammograms, biopsies, et cetera, came back positive and we had a mastectomy in January 2016.

Did you know at that point that men could get breast cancer?

I had never heard of it. Never really given it a thought, to be honest. Even though I had participated at work in all these, wear-it-pink-style events that go on, just never gave it a thought, to be honest.

So what was your reaction?

I was quite laid back about it to be honest! Surprisingly, you know, growing up the big C word was always kind of taboo. You just didn't talk about it to be honest and I was surprised how relaxed I was about it to be honest.

We'll talk a little bit about your reactions and your kind of thoughts about men having breast cancer, but you mentioned you had a mastectomy. Did you have other treatments as well?

Yes. A month after the mastectomy, was put on the dreaded tamoxifen and had a major reaction, pulmonary embolisms, blue lighted. Not funny, but there we go. Lived to tell the tale. Was placed on blood thinners for six months basically and haven't touched tamoxifen since.

And how are you now?

Uh, fine in that respect. I take nothing. And we keep our fingers crossed basically.

Stuart. Could you tell us about your own diagnoses?

Well, yeah, mine goes back 20 years, 2005 I was first diagnosed. It all started, I felt a lump in my left breast, probably a pea-sized lump. Didn't do anything about it. And then probably three months later, my wife just, in bed we were laying down and she felt it and thought, what's that? And I said, I don't know. She said, you need to go and get it checked at the doctor's. So I did. He pretty much like Richard thought it might be a cyst, but referred me to the hospital, to the breast care clinic. Went to the hospital, had the mammogram and the radio ultrasound. And then that's when they took me into a sort lilac-coloured room. Sat me down and told myself and my wife that I had breast cancer. To me, it was a huge shock. I didn't know that men could get breast cancer at that stage in my life. And I just remember coming over all hot and sweaty and having to sort of lay down a bit. They made me a cup of tea and then I had to sort of take it all in. So that was the first sort of talk about it. Um, from there, was like a week till I went and saw the specialist to arrange having a mastectomy on the left-hand side. And also had lymph node clearance cause they found it in, I think three of the lymph nodes. So yeah, that all happened. I can remember being in hospital for a week. At that time I was, I had private cover through my work and I had chemotherapy at home which was done at the time which was very nice because you're in your own environment. Had FEC which is one of the sort of worst ones but had that and then my oncologist talked about having Herceptin as being the new sort of wonder drug for people with my type of cancer, is HER2 cancer, or HER2-positive, sorry. But he was saying, well, it's basically a bit of a postcode lottery at the moment and we're not sure whether you can get it and that sort of thing. He said we can get it in the hospital, but only for women.

Yeah.

And that's when my wife said, what? You know, and she was the driving force behind getting all the letters out to all the TV, radio, MP, all that sort of thing to raise the awareness that I couldn't get this.

So that's how your campaign worked by you getting in touch with loads of different parties?

Yeah. So I remember doing lots of radio interviews and TV interviews and things like that. We went to see Anne Widdecombe, our local MP at the time. And she said, right, I'll write to the trust and all that sort of thing at Maidstone and Tunridge Wells. So yeah, that was all happening. It was all a bit of a, it's all going on in my head. It was almost like I was in my own little bubble, my little world. But I was telling everybody what I had. I wasn't keeping it quiet or anything. Told work... and it was a battle because the insurance company at the time said, no, they wouldn't pay for Herceptin.

Right.

Privately. And then we spoke to the oncologist again at the hospital and he said, well, you know, I'll put things forward. And he then received a letter from Anne Widdecombe putting my case forward and at Maidstone they have to have an individual case treatment panel that oversees it and we'll discuss it and see whether it's viable. And I can remember being at work up in Eltham one day and got a phone call and it was actually Russell, my oncologist, and he basically said, got good news. You can have Herceptin. And I just remember breaking down in tears on the phone and just, cause it was a weight off my shoulders and knowing that I had something else to, use against the cancer.

So it had then been approved on the NHS for all men who needed it?

I think I can't remember if it was all men, but it was approved approved by the hospital for their funding at that time.

Yeah.

So everything was sort of going ahead with the NHS. As it happened about four weeks later, my insurance company also said that they'd pay for it, but I said, you're too late now. I'm going through the NHS and I'll stick with them because they sort of fought my corner. Yeah, and so that's where it all started with Herceptin. So I had my chemo, Herceptin alongside that. And then there was a sort of gap from the initial diagnosis to 2012 when I had another diagnosis which was called a second primary in my sternum. And it was very fortunate that it got found because when I coughed or sneezed, I had a little pain in my chest and I wasn't sure why. So I went again to my oncologist and said, look, I've got this and he said, well, we'll get an x-ray done and see if there's anything in your chest. Had an x-ray and believe it or not, some professional picked it up that there was a tiny little black area they could see on it or...

In the bone?

In the bone. And yeah, and then there I had to then go to the thoracic side of things of the doctor that specialises in thoracics and organise for an operation up at Guy's Hospital in London to have a sternum resection, which again was a massive... thing for me to take on board. And because when you think it's gone to the bone, you think immediately then that's it. You know, it's going to spread everywhere. But after the operation, they said it was all success. Uh, they removed the bone, the sternum bone, and then it was within the margins of that particular part of sternum which was good news. It hadn't spread anywhere else to the ribs or anything like that. Again, I had more chemo after that one and more Herceptin. And at that stage, I started Tamoxifen as well, the drug which is the bane of many people's lives, but I'm still on it at the moment. Again, we had another gap between that and 2017 when I was diagnosed with secondary breast cancer in the lungs. It came about from a sort of bit of a persistent cough that I'd had. Went to a GP, then got referred for x-rays, et cetera, et cetera, and then back to oncology. I had it in both the lungs. They couldn't operate on it because of where it was, and it was in both. So the way to go ahead was more chemo, get rid of it and have adjuvant Herceptin again, which I had intravenously up until about two years ago now. And then I still have Herceptin every three weeks. But it's now called Fezgo. It's the same drugs, but you... an injection in the thigh every three weeks. And it's so much better instead of being in the hospital three or four hours, you can go in as long as your appointment's on time, you're in and out within 20 minutes. And it's amazing how things have come on in leaps and bounds over the 20 years and what drugs are available and how much longer people survive and are still here. And I just, yeah, thank God that I am.

Well, I was going to say 20 years. I mean, 20 years since your first diagnosis. That is incredible. And that is one of the things we love on this podcast because it does give people hope that, you know, if they've had that first diagnosis that they might still be here 20 years on. I'm really intrigued though that they, when it spread to your sternum, because I had mine spread to the sternum bone as well. And that was called secondary for me. And it sounds like it was a lot bigger in the bone than it was for you. But I'm wondering whether what you had in 2012 that they called a second primary, whether they probably would now call it a secondary.

Yeah I don't know to be honest, because I thought that as well. And you think when it's gone to a bone, you think, okay, secondary.

Yeah.

When I discussed it with him and he said, it's so near and it's the same cancer, HER2-positive cancer. So it's relatable. So we call it a second primary. So I just went along with that.

Yeah. I think so many different doctors, different hospitals all have so many different words and terminology and it also all changes as you've seen so much over years in really good ways as well, because of new treatments and things like Fezgo that are, you know, making lives easier.

Yeah.

So you are now living with secondary breast cancer, like me. Were you aware of the signs and symptoms of secondary breast cancer?

I was because obviously I didn't do a lot of reading up on all the things about cancer because you can, you can often read too much and read into everything that you've got another cancer. Um, but I did know certain things about where it could spread. You know, lungs and liver and brain and bones, obviously. So I was aware of that. And when I got the cough, I was sort of a bit wary after a few weeks of still having it. So that was what prompted the going to the doctors at that stage.

Yeah. And what's your approach to living with it?

Just getting on with things really. I mean, I've not worked since 2017, which was when I had the secondary diagnosis and I went off from work on illness, long-term illness. And as it happened, I was only made redundant from that company, um, September last year.

Right.

So I haven't worked since 2017, but I've now got a little part-time job, which is a couple of days a week, which will keep me doing something and more focused and more motivation because if you're at home a lot, you know how unmotivated you can get and yeah, you know not doing stuff and get lazy and that sort of thing. So it will be a big help to my wife and to the family that I am doing something and and it means I can do that and do other things during the week that I like doing which is what I've been doing for the last sort of... well, since 2017, I've been doing all sorts of upcycling and making things out of wood and all this sort of thing.

Just picking up on the second primary.

Yes.

I also had a second primary, the old prostate.

Right.

Which was picked up because they were monitoring PSA levels because of the breast cancer.

Right.

So a second primary. I'm not going to say it's common, but it does happen. And I think in terms of looking out for the signs of secondary, basically it's always in your head that once you've had cancer, you're on the lookout for anything out of the ordinary that may be slightly suspicious. So it kind of doesn't go away. It's no, it's always there. The back of your mind all the time that the potential is there for it to come back and you've just got to keep your self awareness.

Yes.

On track to make sure you pick up something if it is going astray.

Yes, I think that's definitely the case. And I think that once you've had cancer, absolutely, there's always that fear that it might come back. But I think a lot of people don't necessarily know what the signs and the symptoms are. So they think, well, in the first place, I found a lump. And therefore, if it comes back, I'll find a lump again. They kind of relate it back to the, and they think about the breast and they check their breasts because they think it might come back in the breast. But actually people don't necessarily know that if you have a bone pain, you know, if you have a hip pain or something, or a back pain, which is such normal parts of getting older or getting injured through sport or whatever, people don't necessarily relate it. But actually I think when we look at the signs and symptoms, campaigns that Breast Cancer Now are doing, it's all about paying attention to those other parts of the body and just anything that might not feel right, really.

Yeah, anything that's different that you're unsure of, it's just worth it. Getting it checked out basically.

Exactly. And that second primary for you, so that was a prostate cancer.

Yeah.

Yeah. So that's obviously, that's unrelated to the breast cancer and just very unlucky.

Having said that, both of them were stage two, so I didn't have to have chemo or radiotherapy. It's all fingers crossed and touch wood.

So you're both involved in the Men's Virtual Meetup or the Men's VMU. What is that and how can people get involved?

We meet once a month online, a safe space for men that have been diagnosed with breast cancer, basically and we chew the cud and we moan about tamoxifen basically give each other a little bit of support. Yeah, so primary objective is to be there for men that are diagnosed but as well as that we are all pretty much doing as much as we can to create awareness that men can get breast cancer because I don't know exactly what the outcomes are for men, but the last I heard they were somewhat worse than they are for women. And that comes down to the fact that we're pretty lousy as a... ummm...

As a gender, to go and see the doctor!

Exactly, we don't do, we put it off! If men aren't aware that they can get breast cancer, they don't know what the signs are, we typically ignore everything as long as we can. So if we can create a little bit of awareness, get men to check themselves, it's not rocket science. It's got to have an impact on outcomes for men long term, you know?

Yeah, and I think with the men's VMU, everybody's different and everybody's had different experiences of what they found and how they found it and all that sort of thing. But like Richard was saying, it's a very good way of being able to speak to men in your situation. You know, with me, I've had a lot of groups, it's me and 20 women, 30 women and not the men in those groups. So it was great that I had that to go to that group as well. And we've actually managed to meet up a couple of times in person, which has been invaluable as well to meet people in face to face that you've seen on your screen.

It's somewhat different than meeting online when you're actually there. You kind of have a different kind of conversation. But one of the other things that the VMU is trying to do is basically put men in touch with research projects that are going on because one of the big problems that we face as men is that there's not enough research done. So for me, having been diagnosed and had a major problem with tamoxifen, it kind of left me slightly angry that I was being treated exactly the same way that a woman would. Treated because that is the only thing that the consultants and the oncologists have. They don't have any information on what's the right thing to do for men. So my question, which I still haven't had answered is okay, so I was put on Tamoxifen. It's a hormone blocker. Now, my argument is that men are completely... different beasts from women hormonally. So why am I being treated with hormone, a hormone blocker, exactly the same way that a woman would be, you know? So that doesn't mean to say it's wrong, but there's still questions into one, should I have it? Two, should I have the same dose? Is it as effective in men as it is for women? And none of those things can be answered as far as I'm aware. Anything that we can do as a VMU that is going to promote research in breast cancer in men, that's the way forward.

Yeah, definitely. I think that's one of the hot topics that comes up on the VMU, the Tamoxifen issue. I still take it. I think I've mentioned before, still take it because it's like a comfort blanket, if you like, because if I do stop it, I'm worrying that something's going to happen. Whereas other people have stopped it and nothing's happened. Other people have stopped it and they've had their minds being messed up in certain ways.

The point is that everyone's different. Everyone reacts to the Tamoxifen in a different way. I had a nasty reaction. Other men have hot sweats and things like that.

And it's the same with women as well. I know a lot of women who've responded badly to Tamoxifen but I had a brilliant experience with Tamoxifen and it kept me alive for a long time.

And it's the same for some of the men as well. Some of them have no problem with it at all.

Well, I mean, I say I have no problem. It's manageable problems that I have. I've been on it now since 2012 this time. So gone past the 10 years, which is what It was extended to, but when discussing with my oncologist, he said, well, if you want to carry on, you can carry on. And if you want to stop, you can stop. It's like Richard said, there's no data saying what's best. And I said, well, okay, well I'll carry on because it's manageable and there's nothing that's too bad that would make me say, okay, I can get rid of that. And I'm still on it.

It's great that you're volunteering for studies and you know, anything that's coming up because it's similar, not the same at all, because there's only 400 men diagnosed a year in the UK, but for me, as a woman, I was diagnosed when I was 29 and I was told at the time there were certain things that they said, well, we don't have quite enough evidence on that because it's very rare in women under 30 who are pre-menopausal. And so, you know, there were even things at the time then that they didn't know about. And then I've since been diagnosed, not diagnosed, but I've since found out that I have the PALB2 gene mutation, which we know a lot less about than the BRCA gene mutation. So I will volunteer for any study that I can be part of because I'm like, I want to improve things for the future generations and you know, any outliers.

Talking of the BRCA gene test...!

Oh yeah, well I was going to ask you about this. So let's go into that.

The story I like to tell is the one about the old BRCA gene test. So I was sent off to have the test done to a maternity clinic. Now, that's just, it's just not on basically, you know, I'm pretty thick skinned, didn't have a problem coping with it at all but I'm sure you agree Stuart that there's men within the VMU that would really struggle with that kind of thing basically you know. Part of what we're trying to do within the VMU is try and change the pinkness if that's the right way of putting it. But also when you actually go to a regular breast clinic, it was always very pink and women orientated, even the leaflets that they give you, up until very recently, there was no leaflets out there that covered breast cancer in men.

Well, in Maidstone Hospital they had something generic and very basic but they did have a leaflet but not as you were saying.

Yeah, Breast Cancer Now and the VMU have kind of been working together to create a leaflet that we can get out to the various clinics so that men aren't swamped with pink leaflets!

Yeah, I mean, we're talking about pinkness, but I do know a lot of people, women in the breast cancer community who also don't like the colour pink, partly because sometimes it can be seen to make out like breast cancer is a lovely pink, fluffy disease, which of course it's not. And lots of people in the secondary breast cancer community talk about darker pink because, you know, there's nothing pink about having breast cancer in your bones or your lungs or your brain or whatever. But the fact is the pink colour has been an incredibly important and vital tool in raising awareness over the years. And it's done so much good in the sense that we see it in, you know, we see it in relation to breast cancer and breast cancer awareness, so colours aside...

At the end of the day, it's getting it out there rather than just the colour.

The more people talk about it, the better, the more people we see with breast cancer.

And that's where I think you're both doing amazing work because you've come here and you're so open to talking about it, which I think is just fantastic.

I think that's where probably a lot of historical men with breast cancer, they've been a lot older and maybe don't want to talk about it. And a very introvert... I'm not saying I'm an extrovert... in many ways I'm not, but I wanted to tell people and make them aware that you can get it as a man as well. And there was sometimes I'd tell people and I can remember once having my hair cut in my lunch hour and I'm talking and I said to the woman, yeah, I've got breast cancer. She went, no, you haven't. Men don't get breast cancer. And I said, well, do want me to show you where the scar is? And I had to then talk to her about it even more, but then she knew.

Richard, you've said, think men have always been taught to be strong and to be providers. So when they can't, they can feel weak and like they're a failure. What would you say to a man who feels that way?

I think I said that in relation to the initial diagnosis. So you're confronted with being diagnosed with what is essentially thought of as a woman's disease. Things cross your mind in terms of, okay, what's wrong with me? Why have I got a woman's disease? Is there something wrong with me? What's happening? All this kind of stuff's going on in your head. And certainly of my age, and I think probably yourself Stuart, you were kind of brought up, as a male, you're supposed to be there providing for your family and at the end of the day, you're suddenly presented with something that might get in the way of that. The important thing is that you actually look after your health, you get things sorted as much as you can and okay, once you get your life back on track, you can get back to providing and being strong for your family, I think is probably the way forward with that. I don't know, would you agree with that?

Well, I think initial diagnosis, you get those thoughts in your head, at the time I was the main breadwinner. What's going to happen to the house and mortgage, the kids, you know, because that initial diagnosis, you think cancer, death, you know, all that sort of thing. But obviously things have changed quite a lot and my wife's got a very good job now and I've had seven years with no job and now going to start doing the part-time job.

You can be a kept man!

And Stuart, you have two sons, don't you?

Yes, both grown up now.

So what, do you think those attitudes about men being the ones who are supposed to do all the caring and all the looking after. Do think those attitudes are changing with your son's generation?

Yeah, definitely. I mean, my sons, they both grown up learning about me going through the treatments and all that sort of thing. And when they were younger, it was all very much layman's terms and what was happening and just so they knew. now obviously they're grown up men and they know what to look out for. And I don't think they're in that sort of mindset as we other generations probably were. You know, they've both got girlfriends, they've both got girlfriends with good jobs and you know, there's no sort of I'm here and you're down there sort of thing. There's nothing like that. I think there's more of a reliance on a dual income within families these days. Certainly with my children that seems to be the case.

Yeah. And why do you think men are more reluctant to present to their GP with a problem in the first place? In general, not just with breast cancer symptoms, but with any illness?

I think it comes back to that historic, it's in the genes that we're hunter-gatherers and and we've always gone out and shot the rabbit.

I think it's like, you think, right, I'm a man, I can brave this out, I can go through this, it's not hurting too much, it's not too much discomfort. I'll carry on rather than trying to get hold of the doctor nowadays and trying to get an appointment which might be four weeks time.

Yeah, I think it's, you know, one of the messages that men need to take on board is, you know, whether it's cancer-related or whether it's a flu-related thing, you know, if you're not well, then you need to present and let the doctor do what he has to do. I think that's a good thing about the VMU is that, you know, the guys will talk about anything that pops up. Most of the time it's related to the cancer-related issue.

But we do talk about other things. Football comes up quite a lot.

It's that safe space, I suppose. You might not be able to talk to your friends, your male friends about having breast cancer, but you do have this group where the other people understand.

Well, we have the first part of it. We talk through each other's how they're doing, don't we, at the start? Then if we have a speaker, that's good as well.

Yeah, we don't always have a speaker, but maybe once every three months there be a speaker from a charity or a healthcare professional of some description.

And how can someone get in touch with the VMU or how do they find you?

Through the website which is themensvmu.org, I think.

We'll put the link in the show notes.

Excellent. But that's the best link and somebody from the VMU will get in touch with you if you drop us a note, basically.

And VMU is virtual meetup, just in case anyone has forgotten what we said at the beginning. So yeah, I didn't know that acronym until recently.

Richard, you're also involved with Breast Cancer Now's Someone Like Me program.

I am indeed.

How does that work?

Basically, I'm, if you like, a trained telephone buddy, if you like. So any men that have been diagnosed with breast cancer that would get in touch with Breast Cancer Now could possibly be matched with me and I would have a regular conversation with them and help them through anything that they might be struggling with. It's not always about the emotional side of things. They may have specific things they need to talk to the breast care nurses about or, you know, they could have financial problems or all of that stuff that you may have going around in your head when you're diagnosed. If you can talk to somebody that has gone through similar, then so much the better.

So we've talked a little bit about the leaflets and the pinkness and the tamoxifen, but in terms of the other resources that are available in hospitals and online, do you feel like everything's accessible to men?

No, definitely not. I think the... It may be changing and I think what we're trying to do as the VMU is to work out how we can make the appropriate changes. So as a man with breast cancer, I was told categorically having had the mastectomy, there's no reconstruction. For a lot of men within the VMU, again, I think they're comfortable. with that, they don't mind pulling their shirt off and showing the scars. Nothing like having a battle scar to parade around. But at the end of the day, that's not right, is it? Because not every man is going to be the same. It should be equal in that respect, regardless of your gender.

I don't know whether that's NHS thing because I was offered reconstruction.

It could well be postcode lottery again. It depends on your hospital trust, et cetera.

Yeah, we don't know that that's necessarily the case.

Yeah, that was just specific to my situation and my hospital trust basically.

What about when you've asked for advice or support, has there been a sense at your hospitals that there has been an openness and an understanding with about men with breast cancer or did you sort of feel like everything was aimed at women?

I think when you go into clinic, most of the posters are women-orientated. Things are changing a little bit.

My oncologist, obviously having dealt with me and all the nurses and everybody in Maidstone oncology unit, which is one of the best in the country as well as I know for oncology, they've always been great with me as a breast cancer patient. The nurses are incredible in all departments. And I think they do have posters up. I mean, they have Macmillan stuff in the reception area, but they have other Breast Cancer Now posters up on the oncology ward. I've given leaflets over to them about it, we had some stickers, well I had some stickers done didn't I? I put Men's VMU and the little symbol and I stuck them around certain places in the hospital.

Things are changing, but it's a constant battle, I think, isn't it? You know, with things like the pinkness and the awareness, it's something that we've got to keep banging the drum for to make sure that we keep getting the, we keep raising awareness and improving things basically.

I think more people on certain shows on the telly and things are saying, and men do get breast cancer too, but it seems to be more of an aside towards the end of the sort of show. So if they could make it more inclusive. would be a whole lot better. And I think they did the thing on EastEnders was good. With the guy having breast cancer. Whether enough came out of that, I don't know, but he was on our VMU, wasn't he, at one point?

Yes, he came on to us.

I know that Coppafeel, the young person's breast cancer awareness charity, I know they're doing brilliant, all-inclusive work that's inclusive of all genders. And they originally talked about... checking your boobs, but now it's checking your chest, it's checking your pecs and it's inclusive of all genders and they do a lot of that. And that's obviously in a younger age group, you know, hopefully the younger generations will be more and more aware. And by the time it comes to a diagnosis, there won't be that feeling of I didn't know.

Personally, I don't think we should get hung up on whether they're boobs, whether they're breasts, whether they're pecs or whatever. At the end of the day, we all have breast tissue and it's recognising that we all have breast tissue. What you call them, it really doesn't matter a jot. It's about just being aware.

Yeah, of course. What you saying earlier, your wife had a big impact in finding your initial breast cancer.

Well, it was her biggest fear. And then I got it.

For herself you mean?

For herself.

And so she then took it upon herself to do a lot of the, you know, talking to people, getting us on the radio and TV to get that awareness out there. I was forever grateful to her for that.

Yeah. She sounds like she did an amazing job at that. And I also wondered when you were talking about campaigning to get the drug Herceptin, I wondered whether because that was such a difficult time for both of you, whether doing that campaign gave you both some sort of purpose to kind of have something else to focus on to get through that really.

I guess so. I mean, that has always been the case with me over the years, having the different diagnoses is having that concentration on your treatment, the next step, the next step. I mean obviously with me now it's treatment every three weeks still which is ongoing indefinitely at the moment. But that is going in the right direction and all the scans and things are good at the moment.

You know if you're in a partnership with somebody then it's about encouraging your partner to do the appropriate checks as well. And just, just being there and supporting each other on a day-to-day basis, just to get through life.

Yeah, exactly.

What would either of you say to a man who's just been diagnosed with breast cancer?

I would say that it is tough, but there's people like you, you know, and there's also a lot of women that will talk to you about... I mean I'm in two other groups apart from the VMU which are primarily women and a lot a lot of them were breast cancer patients. But yeah, it's just the talking and the communication.

Yeah, it's not the end of the world. Things are changing, there is hope for everyone, the the outcomes are improving all the time, put your trust in your surgeons and your oncologists basically.

And the nurses. And you won't, well, I say you won't go wrong, but that's the best place for you to get the advice from.

And you've both done fashion shows, fundraising events like Walk the Walk. What's it been like getting involved in those things?

It's a bit of a scream really. Yeah, I mean, you kind of... have a little bit of a celebrity status. Because not many of us men around who've had it so...

No. I climbed Ben Nevis with my dad for Breast Cancer Now and raised quite a bit of money then. So that was great and I could do it with my dad. Great memories. And then I've done two fashion shows. Been lucky enough to, I think, I don't know if I'm the only man that's done it twice, but one of the very few, in 2007 and 2013. And that was fantastic, was great experience.

It's probably, probably half a dozen of our group that have done that. I haven't done it myself.

There's time yet!

Yeah. I've done a few moonwalks though.

Yeah. I haven't done a moonwalk yet, but...

All right, so Stuart, Moonwalk for you, Richard, Fashion Show for you.

No!

Get your name down! Get your name down!

So I'd like to finish with the question we're asking everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. Richard, what does it mean to you to live well?

Regardless of being diagnosed with cancer, it's about living life to the full as far as you can with your family, your friends, et cetera, et cetera. Ticking things off that bucket list, I guess, really. What about you?

I think that's true. I mean, certainly more since secondary diagnosis, we've, as a family, tried to do a lot more. Sort of lifetime experiences. Went to Borneo as a family, which was always a dream to see the orangutans and all that sort of thing. We did that. And then we went to the Azores and saw orca and dolphins and other whales, sperm whales and things like that. So it's doing those lifetime experiences with your family and friends and making the most of it. Not letting the cancer get in the way. Which is sometimes easier said than done. If there are things that you can do that the cancer can not get in the way of then, I think it, when it was first diagnosed in that money wasn't so freely available. So we didn't do a lot of the big holidays, but now I'm, you know, 56, there's a bit more spare cash that we've used to do holidays and things like that. And I'm thinking when I say don't let it get in the way, I mean in your head because it's in your head that is the most important thing I think. And I think that's something that, you say living well is, ask people where they can go to talk to people if they don't have anybody to talk to. Join a group if you want to have that social side, even if it's once a month as we do. And I go to another one once a month and we go out for a meal or coffee and cake and things like that. It's just moving out of your normal house environment every now and again and seeing other people where you might not do if you're not working, for instance, which can put people into depression and things like that. It's very much or very important to get out there and have that lifeline of talking to other people.

Absolutely. I really hope that lots of men listen to this podcast because just sitting here listening to the both of you talking to each other and talking so openly about everything I think is fantastic. And I think you'll be a huge support to lots of people as I know you already are with the VMU. So thank you for sharing everything there.

How can any men listening get in touch with you, find out about the VMU or is there any other link you'd like to share with people?

I think basically going through the men's VMU website is the best way of getting hold of somebody, and somebody will contact you if you drop a note through that.

I think when I learnt about the men's VMU it was actually by my breast cancer nurse specialist at the hospital and she put me in touch with them. So some breast cancer specialist nurses do know where to send people. I'm not saying every hospital does.

No, not every hospital does, but we are trying to link up with breast care nurses and trying to get them to have that signpost.

Well, we'll put both the men's VMU and Breast Cancer Now, Someone Like Me links in the show notes. So hopefully anyone can access those. Richard and Stuart, thank you so much for joining us

Thank you for having us.

Thank you for asking us, yes.

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