I went to [name of hospital] for a biopsy, and that were embarrassing.

Was it?

That were very embarrassing. Well you can imagine that you’re sat there in a dressing gown, in the waiting room, full of women and they’re all looking at you and thinking, what’s he doing here? [Laughs] So that, that, you know, I mean that’s one drawback I’ve got when you go for the thing, you’re sat with women. I’veObviously when you go for check-ups, there’s husbands with them and what not, so they don’t know really. But when they call you they know that it’s you. But that’s a little bit embarrassing.

I’ve got one other problem at hospital. They keep calling me Mrs – when they call Mrs [surname] I say, Not Mrs, Mr [surname] you see? Everybody, they think that it will be a she. I said, No, it’s a he

Right, because it’s [name] that you’re known as.

Yes, [name] correct. Yes – they always say Mrs. Not always, but very, very often. Very, very, yeah – and it’s a [inaudible] itself, they’re all about Mrs. Yeah, all about the ladies, so I can’t blame them.

We were talking about how the breast cancer campaign’s very pink and feminine, and I was just wondering what your views were on that?

Yeah – it is not feminine, it is not feminine, and the treatment, the pink ribbon – so everybody differs breast cancer asfemale something, but I can’t complain because there are too many females getting that. However, sometimes, it makes me bother about what’s going on, because people, they keep ignoring men. Yeah. Even hospitals, when you go there, they call you Mrs.

That’s just really rude, though.

Yeah. No, they don’t know me – if they don’t know me, they will call the name Mrs – they will call the name Mrs, so and when Isometimes when I was going to hospital all the time, my wife was going, so my wife would be staying outside sometimes, so they said, Why are you not in Then my wife says, it’s not me – it’s my husband

I mean we’ve been several times to, you know to the hospital and on several occasions, my wife’s been addressed as being the patient. You know, by doctors as well. And of course it’s very female orientated, when you go into the, when you go into the, you know the waiting areas and such like, it’s all in pink. And you feel, you know when you, when your name’s called out, crikey, you know it’s something different, you know. So it’s a little bit, feel a bit self-conscious about that I must admit. I don’t know whether other men do but-. But I think I suppose it’s the nature of the beast, you know that more women unfortunately get breast cancer. But then men do as well, so [laughs].

Well it was a large room, and it might have been, I don’t know, eight or nine bays. Or areas, within that room, where all everybodyall the patients were getting their chemotherapy and such like. And there were curtains round each little bay, but they were open while you were receiving your treatment. They only closed them when I was, if I was sick, if I had been, they whipped them shut then. And, yeah I just- sort of feel that I think I would have preferred, I don’t know how possible that would be, to have been in my own little room while that was done you know.

Why did you feel like that?

Why did I feel like that? Possibly I just felt a bit exposed.

Were you sitting with mainly women?

Yeah.

Did you feel quite uncomfortable being a man in that environment?

Yeah, again you see that was- yes. It was, a very female environment, and yeah you do feel a little bit, like a sore thumb [laughs].

I mean, when I used to go to the hospital to check it was all women and it’s embarrassing sat with a load of women and they’re all going what’s he doing, you know what I mean? And it was all women getting checked up, you know what I mean? it’s like when I went to go into the hospital cos I was the only man there and it was full of women to go in to get operated on. And when they called my name out… they wondered why I was coming, yeah. So I don’t think a lot of women have seen men with it. Cos they all think it’s women.

Do you think they treated you any different because you were a man?

No.

No. What about the other women in the ward or in the centre when you go for your check-ups?

They just looked.

They just looked?

Mhm. Just looked Mr [surname] when you get your appointment, the nurses are real nice to you, call you out, but you always can sense that other patients looking at you when you walk in with a nurse – what’s he in for? Know what I mean?

And was he or she understanding? The breast care nurse, were you able to phone her anytime?

Yes. I had easy access to her.

Uh-huh. And did she have any experience of having men as patients with breast cancer?

No. I was the first man for many people. In fact, my GP at the time retired during my treatment, and in all his time I was the very first man he had ever seen with breast cancer. So it was a very ra well it is a very rare thing. And, anyway, I returned to the oncologist with, for some more follow up treatment, The gold standard treatment for oestrogen receptor positive tumours was tamoxifen, and she prescribed that for me.

And how long did she prescribe that for?

Well, not long.

Right, okay.

There’s a story.

Okay.

In fact it’s very funny, I remember going to this pharmacy to get my prescription. And I handed the prescription in to get the pills, and it was a local pharmacist who came, and the shop’s very busy and it’s very small, pharmacy. And she came through and told me that this medicine was only for women.

Did she do that she do that in a public part of the pharmacy?

She did. And I always remember, she didn’t do it, in a bad- well I suppose it wasn’t very nice to do it in public. But, I remember joking with her and saying, It’s okay I’ll wear my frock the next time. But give me the medicine. So I took the medicine, but there were such horrendous, horrendous side effects for me, that I rebelled against taking it.

Why did they recommend that you went to a plastic surgeon then, this second time? Did they offer you some kind of reconstruction, on the second occasion but not the first, or-?

They had never talked about reconstruction the first time, and I had insisted on being referred to a plastic surgeon.

After the-

After the first time, to see what could be done. And that was greeted with some astonishment, I remember. And-

Again because you were a man asking about it?

Because I was a man, and I was aware that women were offered reconstructive surgery at the point of initial surgery or they could delay it. But they were offered reconstructive surgery. So I felt like Oliver Twist almost, asking for more. But I was determined then that men should be treated absolutely the same as women. And they referred me to- no, they didn’t refer me to a plastic surgeon, they gave me the telephone number of the plastic surgeon, to make an appointment.

So you had to do that yourself?

I did.

Right.

And I phoned- she was based at [name of] Hospital. And, I telephoned to make an appointment to see her. And the person who looked after her diary, I always remember that part.

I phoned the number and the person said, Oh, you’ll have to hang on until I get my diary, [name]. I said, Okay. So, she came back. Okay, mister I remember exactly, she said, Okay [name] I’ve got the diary now. What’s your wife’s name? And that was almost as bad as the pharmacist.

Yeah, it must

An airy this assumption that men first of all didn’t get breast cancer, and secondly they wouldn’t bother at all with the reconstruction and

So, there was just no thought at all that you might be phoning on your own behalf?

Just no thought that I might be the person looking for treatment. Anyway, I made the lady aware that it wasn’t my wife I was talking about, it was me and I was the very first man the very first man, that had been referred, or asked to be referred to a plastic surgeon after breast cancer treatment.

Some women when they go along for treatment, become involved in clinical trials or different things like that but…?

I would, I would make the point that the treatment for male breast cancer is very much on the coat tails of the treatment for female breast cancer. And I’m not saying that the, that the consultants are in the dark, about male breast cancer, because obviously they learn as they, as they go on, but, there has not been the in-depth research into male breast cancer, because there aren’t enough people. So, it’s a bit, I’m going to say it’s hit and miss, that’s probably being a bit unfair, but it’s, it’s a calculated risk as to what they do.

And presumably you were never asked about taking part in any trials or anything, anything like that along the way?

No they would often have, student trainees there, with the consultant, and I was always happy to let them come in when I was being examined and everything else and (cough) their eyes would perk up when the man came in, some, somebody a bit different.

Yes, so as, you know, it’s fantastic that you’re able to give people experience themselves to sensitise them to possibly coming across it in the future.

I’m sat in the chemotherapy room, going back to the chemo days now, but we’re in a room where there were maybe, you know, eight to twelve people and obviously all women cos they were all breast treatment on the same day, and you listen to them talking. Oh, what kind of trial are you on Oh, I’m on this tria and oh, I’m on this trial Oh, I’m not having radiotherapy, I’m just trying this chemo I ain’t had an operation I’m going hold on a minute, what’s going on here? I were just told that I would be having a full operation, full mastectomy, I would be on chemotherapy and I would be on radiation treatment. There were no mentions of trials or what you want for this and what you want for that. I said, What’s all these trials Oh, well, we were given the choic. I thought oh, weren’t a choice for me. I were just told. Why not a choice for a man? I’ve no idea. When I started asking, oh, well, there’s no trials for men because there ain’t enough men get i, simple as, and it’s down to cost, like everything’s down to cost, soyou can apply for these trials if you want, so obviously you’re recovering, they say you can’t do anything, so you’re trawling the internet looking for info and you’re finding all these trials, and I put my name down for trials. Trial here, trial there, only to get repliesoh, we’re only looking for pre-menopausal women or we’re only lookingI said, well, I’ll never had a menopause in my life so I’m ideal obviously. Oh, but you’re a man, we don’t want me. Simple as, you know? So nobody wanted a man.

All within this period of time as well, I should have said that withinfrom seeing my oncologist going forward, because he had mentioned about Herceptin, I was trying to, be put forward for this, and we kept coming across sort of barriers, the first one being my private healthcare company who wouldn’t pay for it and, they said it didn’t come within their criteria of treatment, and that they said it was preventative treatment. And I said well surely every drug’s a preventative treatment, really? But there was a lot of sort of to-ing and fro-ing between myself and my oncologist, writing letters to the insurance company and this sort of thing and this went on for quite a while and they said no and then we sort of went back to them again and sort ofa bit more evidence, if you like, and they still said no and we even got Anne Widdecombe involved, which is our local MP, and this sort of thing. So this is why there was a lot of press involved andthere was bits in the paper and did various interviews for the South East News and this sort of thing to sort of raise awareness of the fact that I couldn’t get this treatment as well as raise awareness for the fact that men could get breast cancer as well, so it was good in that respect. The next step after the radiotherapy would have, or should have been the Herceptin sort of as soon as possible, but between when I had finished, which was February 2006 that I finished my radiotherapy, I didn’t actually start Herceptin until May.

So there was a sort of three-month gap, and between that time it was all sort of rigmarole of trying to get the insurance company to pay for it and then they said no, and then we went, then my oncologist went to try and get it through the NHS and of course at that stage as well it still wasn’t licensed and there was a lot of other people trying to get it and they were saying about a postcode lottery and this sort of thing, and the first sort of time my oncologist tried to get it, I remember him saying well, we’ve got a criteria that we can give it in the hospital, you know, you fit within that, you know, got HR2 positive cancer, blah, blah, blahSo we thought great, you know? Shouldn’t be a problem at all, and then it turned out that he’d put me forward for it and then he got a rejection from sort of higher up within the hospital to say that I didn’t actually fit within the criteria, and I thought, well, you said that we did and he said well, no, it’s only, the money’s apparently been put aside for wome and I can remember when he said that, [my wife] was with me at the time in hospital and saidyou know, this can’t be right, you know? Surelyif it’s there, it should be for everybody and not just because it says women. And we went away from that feeling really angry and upset and obviously it wasn’t the oncologist’s fault, cos he was doing his job for us and he was just told sort of from higher up.

So when you went into hospital to have the operation did you go into a general surgery ward or?
Well actual fact I ended up in a room on my own. So, so yeah. Tip top treatment that I had, can’t complain at all.

That’s very good to hear. And when you were at the breast cancer clinic can you describethe breast clinic, can you describe a bit more about what that was like just before we started the interview your wife mentioned that everybody assumed…?

Oh well yes, because I was a man, yes, I was the star of the show me – all the nurses running around, and good rapport with people and everybody fussing me which I thoroughly enjoyed.

So you felt that you stood out from the crowd but in a…

Absolutely yes.

s a celebrity rather than in an uncomfortable way for you?

It wasn’t uncomfortable at all. There were tonnes of people, well I’m outgoing anyway so. I like talking to people. That wasn’t an issue.

And in the way you were treated had they, had other men who’d been diagnosed with breast cancer?

The senior consultant he said to me, well he said, You’re the only ma, this was in the May, he said, You’re the only man up to no. He said, I may get another one in the yea. That was in 2006. So you can tell how rare, and he says, I mean because there’s only 300 men in the whole countr, which I subsequently learnt, and the chances of getting anyone else are pretty remote.

One of the things I’ve found recently is I’vebecause when I go to the clinic, the [cancer unit] is that they, there’s about 200 women there in the clinic and there’s me, and I get called and sort of, the first time we went, they thought it was my wife that was getting called in, and now of course they know me, thatthat it’s me, so
Do you feel you were offered the same service as what a woman gets?

I would have thought it was just a bit better, in as much as I was a man and all of them were keen to help this lone soldier, type of thing, you know? And still today, and because I take interest in them, I go and visit them in the chemo room and say hello and they say hello, how are you getting on and they’ve seen me bald and they’ve seen my hair come back and, you know, Oh, you’re looking good, you’re lookingrdquo;, you know? And ehSo they all know me by first name and so on.

I’ve got to say it – the information I had from the hospital was useless. Absolutely useless. Cos it was all female-orientated.

And how does that make you feel, as a man?

Well, as a man – it was more, not as a man, it was a male patient.

Sorry, that’s what I meant, as a male patient?

Well, I felt sort of second-class – they weren’t treating me as an equal, you know? But that wasn’t reflective of what they actually did when I was in hospital. They were superb. I mean, I couldn’t fault it. Even though I was on a bowel ward, the nurses – for a start, they didn’t know how to dress the wound, so they went off and found out. It wasn’t a case of trying it to see if it worked, one of the nurses actually went to the breast clinic and found out how to dress it properly. So, you know, she took the trouble to do that, rather than try and do it wrongly, she went and found out how to do it correctly. So when my breast care nurse came to check on it, she was surprised that it had been done correctly, you know, to that point. I think there was one little adjustment that she had to make, but, you know, to do with the drain – but that was good, from my point of view, that they’d taken the time to do that.

And again, she felt comfortable enough to say, well, she perhaps hadn’t come across that before then?

She hadn’t, no. I mean, you know, literally, you know, Oh, you’re my first breast cancer patient I mean, that was, you know, on the lips of almost everyone that dealt with me. I was a bit of a celebrity in the ward! (Laughing).

And did that feel okay?

Yeah, I was quite comfortable with that. I mean, I wanted people to know that men got breast cancer, and I still do, and, you know, that’s why I’m doing the interview, and other things as well, to make men aware. Men check other parts of their anatomy, but they don’t check their breasts – or if they have a problem, seepage around the nipple, or hard nipple, or, you know, little painful areas around the nipple, or other parts of the breast, they should go to their GP. And I don’t see where the stigma is, I mean, you know, just get on with it, get it checked out. it’s such an easy procedure to do.