David W - Interview 04

Age at interview: 57

Age at diagnosis: 52

Brief Outline: Diagnosed with breast cancer in 2003. He had a full mastectomy, chemotherapy, and radiotherapy. He stopped taking tamoxifen after two years because of the side effects that he experienced.

Background: David is an office administrator. He is married and has 2 children. Ethnic background' White.

More about me...

 David W first noticed he had a lump under the pectoral muscle whilst in the shower and again when he was on holiday in the summer. He kept an eye on it and in October went to see a locum GP who referred him for further checks a few weeks later. At this stage he had no thought that it could be cancer because neither he nor anyone in his family was aware that men could get breast cancer and he had previously had other lumps elsewhere which had just been fatty tissue.  

He had a full mastectomy, and half of his pectoral muscles and 16 lymph nodes removed. He had good movement in his arm even very soon after the operation and little pain. He had chemotherapy, then radiotherapy, then more chemotherapy. 

He had tamoxifen but felt horrible whilst taking it. He put on weight and had hot flushes. He was worried about what tamoxifen was doing to him as a man. He was advised to take it for 2 years then stopped.

He really appreciated the support from his family, and thinks that partners and families often don’t get mentioned enough. He was also put in touch with another man with breast cancer through Breast Cancer Care’s peer support. He found it a real relief to talk to another man who could answer his questions. He found other men like him were also struggling to try and find information. He felt alienated by the booklets that he was given when he was first diagnosed because they only really focussed on women. He contributed to a booklet for men with breast cancer but is frustrated that there is nothing new since then and that almost all of the information about breast cancer is geared towards women. He thinks there is a real need for greater awareness about breast cancer in men. 

He talks about the lack of choice of treatment for men with breast cancer, whereas women are given lots of choices and the opportunities to take part in clinical trials.

 

David first noticed his lump on holiday. Later in the year he went to his GP surgery and the locum GP said he would refer him. His hospital appointment was not for another 10 weeks.

 I first noticed a problem? Believe it or not, I was on holiday. I think we were in Italy at the time, around Lake Garda, and shower, either drying or washing, I don’t know, but you just brush and you’re thinking “that’s strange, that.” I got my wife down yeah, it’s a lump of some sort, but didn’t think much about it, but this… it didn’t go away. I kept checking it every so… and it would, sort of underneath the, you know, underneath the pectoral muscles, around here somewhere, not thinking a lot about it, not knowing anything, just kept my eye on it and it kept going, but it wasn’t going away and sometimes it was, it seemed larger than, you know, other days, it just seemed to… oh, it’s gone again. Oh no, it’s still there. You know, because of the work schedule, decided to go… well, there was a window in the work schedule in October, so I went to the doctor’s in October, to the local GP. Unfortunately it was a locum because our GP was on holiday, so… saw the locum, who looked at it and he just said, “Well… don’t think there’s much to bother, it could be a cyst or something like… I don’t think there’s a lot to bother about, but we’ll have it checked out. I’ll refer to you to the hospital and let them have a look at it”, so… he just said “if you haven’t heard anything in two weeks, give us a ring or give the surgery a ring.” And I ain’t heard anything in two weeks. And I rang the surgery and they just said “haven’t got anything but we’ll check up for you, you know, we’ll make a few phone calls and see what’s going on, we’ll give you a ring back.” So within, I’d say within a couple of hours they rang me back and just said “yeah, there’s an appointment made for you, it will be in December”, which is like, ten, eleven weeks away from whenever. So thinking, I mean, little problems with, you know, lumps and bumps all over the body anyway, so I just thought, well, ten weeks is not too bad, you know? It’s pretty quick, really, so… went for the… on to the clinic, it were just a general surgery clinic, for them to have a look and I just, you know, mentioned that it was in the breast area and then he just looked and he just said “it’s not really – if you’d have been a woman and you developed a breast, that lump would be well underneath and nowhere near the breast anyway, so… but we’ll have it looked at” and he just felt around a little bit and went “mmm… I think we’ll have a scan on it”, you know, ultrasound.

David W was sent to a general surgery clinic. When they heard his lump was in the breast, he was sent for an ultrasound. Things went into 'overdrive' and he had a mammogram and biopsy.

 So… went for the… on to the clinic, it were just a general surgery clinic, for them to have a look and I just, you know, mentioned that it was in the breast area and then he just looked and he just said “it’s not really – if you’d have been a woman and you developed a breast, that lump would be well underneath and nowhere near the breast anyway, so… but we’ll have it looked at” and he just felt around a little bit and went “mmm… I think we’ll have a scan on it”, you know, ultrasound. So they did an ultrasound and… bit of a jokey guy, I’m watching this little black blotch shape on the… I said is that… “Can you tell if it’s a boy or a girl?”, so we had a joke about that. And they went “mmm…” and they brought this picture of the thing on the screen. Nothing mentioned, and I didn’t know that, you know, as I say, cancer was nowhere in my thoughts cos I didn’t even know that men could get cancer. So from then on, I mean, it was like ten, eleven weeks before I got to the hospital, but once the pictures had started coming up, everything seemed to go into overdrive then. And from, say, going for the scan, we had a mammogram on… again, laughing, joke, said, “You won’t get my little things in” but, “Oh yeah, we can”. So we had a mammogram and then it were… because we’re based in [city], and [hospital] and another [hospital] are the same, or more or less the same health authority, it was a case, can you get to [hospital] for a biopsy? You know, we want to have a look at this… this thing going on. So I said yeah, when are we talking about? And this were, like, Monday. Can you get there for Wednesday? Yeah, yeah, fine, no problem. So as I said, made my way to the clinic in [hospital] which happened to be a breast clinic, and then walking round there, looking for a… “Well, what you doing? This is breast clinic?” You know? I said well, “I’ve been summoned”, I showed my papers, they went “oh, yeah”. “Come for a biopsy”. So… went for the biopsy. That’s uncomfortable, that. Shooting, shooting… it’s just like being… well, I’ve never been shot but it’s just… oh, stab! And took about five pieces of this thing out.

David W went on his own to get his results, not expecting to hear he had breast cancer. He noticed that there were a lot of people around as he went in to his consultation.

 So I turns up, obviously [wife] said, “Do you want…?” I said, “No, I’ll be fine”. I said, “It’s just a result from this stupid lump, whatever it is”. Turned up for the clinic and I’m sat there and… there’s all women and only men that were there were supporting and whatever. Anyway, it came my turn and people were… “What’s he going in there for? You know, breast clinic and sorta thing”. Anyway, went in and the… [consultant], the specialist, was sort of sat at her desk and sat down by the side. “Right, mister, how are you doing?” “I’m fine, yeah.” We just had a chat and I noticed out the corner of my eye these people coming in from all directions, you know, until there were about five people stood around me and then she got down, she says, “Yeah, you know, you found this lump, we did a… ultrasound, a mammogram, fine needle core biopsy”, you know, “We’re sad to tell you you’ve got breast cancer.” I’m just… what? “Men don’t get…” “Oh yes, you do, and you’ve got it”. So you’re just thinking… all you’re hearing is the cancer. I mean, all the people I’ve ever known had cancer, they died within a short period, and that’s all you’re thinking, not knowing how bad it is and not knowing that, as I said, men could get breast cancer.

David didn't know men could get breast cancer so was really shocked when he got his diagnosis. He worried about how long he had got and how to tell his loved ones.

 The specialist, was sort of sat at her desk and sat down by the side. “Right, mister, how are you doing?” “I’m fine, yeah.” We just had a chat and I noticed out the corner of my eye these people coming in from all directions, you know, until there were about five people stood around me and then she got down, she says, “Yeah, you know, you found this lump, we did a… ultrasound, a mammogram, fine needle core biopsy”, you know, “We’re sad to tell you you’ve got breast cancer.” I’m just… what? “Men don’t get…” “oh yes, you do, and you’ve got it”. So you’re just thinking… all you’re hearing is the cancer. I mean, all the people I’ve ever known had cancer, they died within a short period, and that’s all your thinking, not knowing how bad it is and not knowing that, as I said, men could get breast cancer. She’s telling me all that was gonna be going on, you’ll be having an operation and blah, blah, blah and you’ll be doing until we open you up, and you’re just thinking cancer, cancer, cancer. That’s all you hear is the cancer. How do you tell your loved ones you’ve got cancer? You know? It’s a lump, for God’s sake. I’ve had lumps all over the place and they’ve been nothing. Anyway, eventually you’re told that you’ll be having a mastectomy, a full mastectomy to the right side, depending until we open you up how bad it is what, you know taking the lymph nodes and whatever else, so yeah, fine, and you’re eventually given a load of leaflets and taken away to, you know, with a breast care nurse to give you the booklet with all these leaflets, “Take these leaflets away, [name]” and, you know, “this’ll tell you all you need to know.” So fine. You’re given, you know, after about half an hour or whatever, you’re walking out the hospital, walking back to my car and just sat in my car just going… how long have I got? Simple as. How do you tell, you know? I’ve got to phone [wife] who’s at work and I’ve got to phone the children who are both at work and I’ve got to go back to work meself and tell the people there I’ve got… you know, I’ve got a damn cancer. And your world just falls apart, really. As I say, I sat in my car about twenty minutes, something like that, before I went better phone, got on the mobile and phoned [my wife]. Got everybody told and we met, met at home to decide the future. I say it was the 19th of December so it’s just before Christmas. I thought well, what kind of Christmas are we gonna have, you know? And New Year as well, I wonder if this is gonna be the last one, etc, and then you’re just on edge then all the way through the operation. 

David could not believe how well he felt when he came round after his mastectomy. He had no pain and felt that a load was lifted off his mind after the operation.

 So you look forward to this date and see how you’re going, and thinking you’re gonna go on a cancer ward but you’re just on a general surgeon ward and… I turns up for the hospital appointment, the operation was about 4pm and [wife] came to see me at 6 and I was just as right as a bobbin. Couldn’t believe how, how well, I felt, you know, you’ve lost all this side of your body and no pain, nothing. Just obviously coming round from the anaesthetic, but felt fine. Absolutely brilliant. [wife] was amazed and, you know, how well I looked. “You look really well” so I said “yeah, I feel really good.” And it were just like yeah, it’s happened, I’ve got rid, you know? A load’s lifted off your mind, really. I’ve come through the other side. Silly, in’t it, what you think? Anyway… get the hospital, the nurses and doctors said “what kind of painkillers do you want?” I said “well, what can I have?” They said “well, you can have anything from paracetamol to morphine, depending how bad the pain is.” I said well, actually, I’m not in any pain, which is unbelievable to think. As I say, you’ve lost all this side and you think there’s no pain. Obviously it’s in, you know, bandages and whatever else that you don’t really know, until they took the bandages off and sorta looking and you’re thinking .. they put a zip in, cos it’s just like, you see this staples from there and they disappear under your arm. 

 

They actually said, “Yeah, we’ve got everthing, but we’ve had to take half your pec muscle, half the muscle, and I think it was about sixteen nodes, you know, which is strange, but they were all clear, so .. which was good, a good thing.

 

David heard female patients talking about the choices they had been offered and the treatment trials that they had been asked to take part in. He wondered why there were no similar choices for men.

 But as I said, you just accept that you’ve got to have everything that they tell you, until you start, you know, 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 trial” 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 choice”. 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 it”, simple as, and it’s down to cost, like everything’s down to cost, so… you 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 replies… oh, we’re only looking for pre-menopausal women or we’re only looking… I 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 men”. Simple as, you know? So nobody wanted a man.

When David went along for his chemotherapy he heard other patients talking about being on drug trials. When he put his name forward for a trial he was told they didn't want men.

 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 trial” 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 choice”. 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 it”, simple as, and it’s down to cost, like everything’s down to cost, so… you 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 replies… oh, we’re only looking for pre-menopausal women or we’re only looking… I 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 men”. Simple as, you know? So nobody wanted a man. 

David had brilliant support from his family and his wife was a 'brick'. He knew that his cancer was also a very difficult experience for his wife and children.

At the time when you were going through it, what sort of support did you get from your family?

 

Brilliant. Oh yeah. I mean they’ll say, it takes a strong family to get through it, because you do go through hell, you know partners and the family go through hell, but there isn’t a lot of support for them, and certainly they’re never mentioned really. You know it’s horrible for them as well. They go through everything apart from the treatment. But they see- luckily we have a strong marriage, that’s what pulled us through, there is a lot of partners that disappear, but yeah, she’s a brick. Honestly is.

 

What sort of things did they do, that you found supportive?

 

I got left off washing up for a week or two. (Laughter.) No she’s there to listen to you when you’re down. They’ve seen me low, I mean they’ve seen me at rock bottom. You know they’ve seen me angry. You lose a lot of temper - frustration. It’s frustration through not finding answers, and just- it’s just so alienating, with the breast cancer or it was then I said, may be different now, I don’t look into it the same, as I used to. It’s like anything isn’t it, further away you get it’s- the memory’s still there but it gets easier. So, it does get easier too. And you’ve got to, just get easier, simple as. It’s horrible at the time, but yeah. 

 

So was it sort of practical support and emotional support, or just-?

 

Both. Yeah, yeah. Just support in general I think, just being there. You know you need a, yeah. [wife will] probably tell you better than I. I mean she put it down, it’s not him, it’s treatment. It’s just how he’s feeling at that moment, you know. Which is I suppose a lot.

 

So it was really them that got the full force of the- whatever you were feeling?

 

That’s right. You always pick on your loved ones don’t you. Nearest and dearest always catch everything. It’s horrible. It’s just- yeah. It’s not me. It’s changed me. I used to be a nice placid guy but, I’m not anymore, I’m- no. I don’t know if it is that or if it’s- you know as they say, everything gets blamed on it.. 

 

David said it was a relief to talk to a man who had had a mastectomy and chemotherapy. He felt the man he spoke to was able to answer his questions.

 so… we got on with Breast Cancer Care and I heard about this peer support thing which is you can, you know, contact breast cancer... and they will put you in somebody, cos you’re wanting to know, I couldn’t find any answers to my questions. I wanted to know another man who had gone through this, but men are few and far between in this country. Only places where I could get information was America’s got a good site, Australia’s got a dedicated site for men with breast cancer, and… too far away. Can’t talk to men in Australia and America, I don’t know anybody, and eventually I went through this peer support with Breast Cancer Care and got in touch with a guy in [place] in Scotland, believe it… a guy called [man’s name]. And what a relief it were, talking to a guy who’d gone through exactly the same things that I’d gone through, who had had a mastectomy and who’d had chemotherapy and who’d had, he could answer all my questions, you know? And it was really good. Liked the idea, so I sort of, well, I’ll volunteer for this, you know, for this… but just been only a few months into the… well, you’ve got to be twelve months before you can do this.

 

You sound as though you’ve got quite a strong group of you through the breast cancer (overtalk)?? it seems like there’s quite a group of you?

 

Yeah, they’ve gone now, but as I say, you only… because we’re, you know, one in Scotland, one in south, one in Manchester, one in… you don’t see them. It’s not like, you know, there might be ten women in your town or twenty women in your town, but when you’ve only got one, you know, you can’t get together, can you? You can’t have a meeting… all coming up from Cornwall to have a chat [laughs].

 

David told 'every Tom, Dick and Harry' about his breast cancer so that they would know that men could get breast cancer.

So once you told your family about… and you’d had the day here with the four of you, who else did you tell after that?

 

I told obviously my immediate family. You know, as I said, my mum is the only one alive now, so… tell my mum and she tells everybody, you know? It goes round. Yeah, I weren’t frightened to tell anybody. Told the work colleagues, you know? I’ve got a diagnosis. I didn’t want to… because I’d never heard of it, why should I keep it quiet? If it’s happened to me, it could happen to somebody else, simple as. So, you know, a lot of people I didn’t know, you know? I didn’t know. I told my man to check himself now, not only his nether regions but his chest as well, you know? Which is a good thing. So I tell every Tom, Dick and Harry. They bore me. They’ve made me a sort of, well, a cardboard box and put ‘[participant]’s soapbox’ so when I get going they just bring it out.

 

Was there anyone you didn’t tell?

 

No. I don’t think so, no.

 

David said that, even five years on from his diagnosis, he still finds that many people don't know that men can get breast cancer.

 It’s never, ever… it were never, ever mentioned that men could get breast cancer. I know it’s a few years down the line, but no, it were just a general shock. Oh, didn’t know men could get it, you know? It’s still happening today. I didn’t know men could get it. I remember being on a course with Breast Cancer Care in Sheffield and we were staying at a hotel and having a drink at the bar and the guy went “oh, you know, are you part of the delegation?” and I said “no, I’m a patient”. “What? You have…?” “Yeah”. “I didn’t know men could get it”. So we spent an evening with him, telling him that men could get it, you know? Really, really strange. And they say we’re now five years down the line and people are still going “men don’t get breast cancer, I’ve never known that.” So it’s still shocking.

David points out that there is no difference between breast cancer in men and women.

 No, I don’t like male breast cancer as I told you. I think breast cancer in men would be better because I always said “oh, I’ve got male breast cancer” and one guy, I don’t know if he was a medical or just somebody I met. I forget, it’s too long ago, and he just said there’s no difference between men breast cancer and women breast cancer, and you don’t call it female breast cancer so why should you call it male breast cancer? You know, which is right, when you look at it. It’s breast cancer in men would be the nice title, or a nicer title, and the guys I’ve met through the journey have all said the same thing, you know? Breast cancer in men better than… I know there is a lot that call it male bre… but what is the difference? There is no difference.

 

Do you think by using the title ‘male breast cancer’ we’re making it sound as though it’s different?

 

Yes, it’s as though it’s something completely different, and you know, a lot of charities do use male breast cancer. What’s the difference? I’m told there’s no difference. I’m treated as though it’s a female cancer, you know?

 

David no longer takes his shirt off because he is conscious of the sun, but he does think that it is easier for women to cover a mastectomy scar with specially-made clothes.

 I’m not bothered now. Maybe at the time or maybe if I were younger, I don’t take me shirt off or owt like that, you know, cos you realise what that big sun can do to you. So I’m just very aware now. You know, so no, I’m not that bothered, no.

 

Do you go swimming and…

 

I have done swimming, yeah, but I think you’re self-conscious at first cos you think everybody’s looking at you, but… I wouldn’t be bothered, no, you know? I’d go swimming if I needed to go swimming.

 

You would take your top off if you wanted to?

 

Yeah, yeah, I would, but I don’t take it off, but it wouldn’t stop me taking it off.

 

OK.

 

That’s again where the women differ from the men cos women can have clothes made. You know, men, there’s nothing for men it’s just... If I put a tight t-shirt on, not that I would, but I would be lopsided, you know? Simple as.

 

And would that bother you?

 

No.

 

No?

 

Not now. It might have done right at the beginning, but as I say I’m mature and it’s sort of, you know, I’m not on this earth to be looked at or whatever else. I’m just a normal guy trying to get round his normal day of work, so yeah. I were very self-conscious at the beginning, very self-conscious, but as I say, not now. So…