Roy - Interview 30

Age at interview: 67

Age at diagnosis: 65

Brief Outline: Diagnosed with breast cancer in his right breast in 2009. He had a bilateral mastectomy because there was some evidence of early spread to the left breast. He chose not to have chemotherapy, but did have radiotherapy. He is currently taking tamoxifen.

Background: Roy is a retired builder. He is married and has adult children. Ethnic background' White British (English).

More about me...

 Roy noticed a lump just above his right nipple whilst he was away on holiday. He saw his GP after he returned, and within half an hour of his appointment, his GP rang to say he had arranged an appointment for him at the local breast unit. Neither he nor his family had had any idea that men could get breast cancer. He found it rather daunting to be in the waiting room at the breast unit with so many women. He had a mammogram and returned later for a steriotactic biopsy. 

Because he had evidence of some early cancer spread to his left breast, he had a bilateral mastectomy on his consultant’s advice (although he was also offered a lumpectomy) and the removal of some lymph nodes. He found his surgeon’s straight-talking attitude helpful. He recovered quickly from his surgery. He chose not to have chemotherapy because he thought, for the small additional improvement to his survival chances that it would offer him (2%), it was not worth the side effects. He did have radiotherapy, and said that the staff who administered it were brilliant which made it much easier. After he started his radiotherapy he developed a urine infection which was not immediately tested for or diagnosed. This made him feel really ill and he lost a lot of weight. He recovered well from this once he had been prescribed antibiotics. 

 

Roy had been fit and healthy and doing strenuous physical work right up to the time of his diagnosis.  People had been surprised by the level of fitness he had maintained for his age. After the surgery, radiotherapy and tamoxifen he felt really tired and was no longer able to continue working as a builder, with obvious financial implications. He could no longer lift without his chest muscles and he no longer had any grip in his left hand. He has been careful to keep his arms covered since his surgery and to avoid bites, scratches and cuts to prevent lymphoedema. On one visit to a small local hospital a phlebotomist challenged him very rudely when he said that she needed to draw blood from his foot instead of his arms. After she refused to do it, the hospital manager arranged for a very experienced nurse to take blood from his foot. Otherwise he had found the hospital staff to be caring and concerned. 

 

He found that the tamoxifen made him more emotional to start with, but this settled down with time. He also found that his arms got really tired and achy, and his skin felt very itchy. The tamoxifen also makes him sleepy so he takes them at night. Because several of his family members had had cancer, he had genetic testing. He was pleased for his children and grandchildren when this came back negative.

 

Roy has always been a determined person with a laid back attitude to life; nothing panics him. He has never been a moaner and does not let things that he can’t do anything about bother him. He has a close and supportive family, so has not felt that he needed extra support himself, but he has often been asked to speak to other women with breast cancer and to a man with other cancers.

 

Roy noticed a lump close to one of his nipples whilst in the shower. He had no other symptoms and at first wondered whether he had knocked himself.

You said you’d found it when you were on your fishing trip?

 

Yeah.

 

So it was just a completely painless lump?

 

Just a painless lump, about the size of my little fingernail, just a tiny, like a pea – just right above the nipple.

 

And so you just suddenly noticed it?

 

Well, I found it when I was in the shower, and I thought, that’s funny, you know? A lump there – must have knocked… perhaps I knocked myself or something, you know? And then, you could just see it, you know?

 

And was that close to your nipple?

 

Right beside me nipple, right above, just above me nipple – like sort of right on the nipple, you know?

 

But the nipple itself wasn’t affected at all?

 

No, no, no but I lost both my nipples. During the operation, but no, you know – it was, well, it was out of the blue, really, you know – just sort of, one day I’m out there fishing, fit and healthy, doing what men do, and then the next day I’m sort of, you know? But…

 

So that we just the very first time you noticed it, and as you say you came back down from your holiday and went straight along to the GP?

 

When I come back down, I went to the GP – but apparently it was a good job I did, lucky I did. It was really lucky I did.

Roy's doctor said he was 'very worried' when he showed him his breast lump and he acted immediately. Roy was phoned by the Breast Unit within the hour and had an appointment two days later.

Well, I was on holiday in Scotland. I was fishing, and I felt a lump on me right breast, just right above the nipple. Really didn’t take much notice, coz I didn’t, obviously didn’t know that men suffered from breast cancer. I didn’t have a clue that men suffered from breast cancer, you know? But when I came back off holiday and me wife sort of said, “You’d better go and see the doctor,” which I did, he sort of, he never said what it was, but with his reaction, I virtually knew what it was, you know? But I left the doctor’s and came home. By the time I got home, [place name] Breast Unit was actually on the phone to me wife, asking me to go over to see them – so he got straight on, within half an hour of finding, you know, me going to see him. Within half an hour, he’d been on to the breast unit and they’d got straight back on to me, obviously to go for some tests, which I did. I had a mammogram, which is very uncomfortable.

 

So that was just the very first time you’d noticed it, and as you say, you came back down from your holiday and went straight along to the GP?

 

When I come back down, I went to the GP – but apparently it was a good job I did, lucky I did. It was really lucky I did.

 

Good. And so you said your GP obviously responded really quickly?

 

Straight away (clicks finger), yeah.

 

Yeah?

 

He must, as I walked out…

 

So he must have known that men could get breast cancer, then?

 

He knew what it was. He knew what it was – coz he said to me, when I went in there, I knew, I could see the change in him, you know? And I said, “Oh, I’ve got a lump,” and he said, “Oh, whereabouts?” I said, “On me breast,” so he said, “Oh, let’s have a look.” So he was feeling it, and I could, and he said, “Are you worried about this?” And I said, “No, not really.” So I said, “It’s just everybody said I should come and see you with it, you know?” He said, “I’m worried about it, very worried,” he said.

 

So that was his immediate response?

 

That was his immediate reaction, yeah. So he said, “Look, go home,” he said, “You will be hearing from me fairly shortly.” Well, it took me twenty minutes to drive from the doctor’s to here. I pulled up in the car and me wife’s come running to the door with the phone. She said, “Quick, [name] Breast Hospital are on the phone.” Well, I run me own business and everything, and I had done some work for the [name] Breast Hospital. They put all the new drains in for the radiation unit.

 

So you knew it well, then?

 

Well, yeah – but I thought, “Oh, they’ve got some more work for me,” you know? Coz we had JCBs and stuff like that for digging trenches. I thought, oh, they might have some more work for me. And they said, I knew, when anybody calls me [name], I know it’s the National Health Service, coz everybody else calls me Roy. You know? So he said, “?” I said, “Yeah?” He said, “Just had a call from Dr – you’ve got a lump in your breast. We need to see you urgent.” So I said, “Alright. When can you, you know?” “Any time you like. You name it and I’ll come,” you know? So they said, “Right, come on Monday,” which I think was a couple of days away. So straight away, I went over, and I’m sitting there, and I’m thinking, well, this is strange – it’s all women. There’s all these women there, and they’re all saying to me wife, “Have you had yours done yet? Or you waiting to go in?” And she said, “No, it’s him.” 

Roy describes what it is like to have a mammogram as a man.

And you’re just saying there about, you know, it being easier to find because you were a man and didn’t have a lot of breast tissue?

 

Yeah, well obviously it just sat on the top of the muscle, really.

 

But then you were saying that the other side of that was that it was pretty uncomfortable to have a mammogram, as a man, with not much breast tissue?

 

Yeah, it was very uncomfortable. Yeah, it hurt – and I thought, “Ooh, they’re gonna,” you know, like, coz they’re trying to make something, and I didn’t have, you know, like a lot of chaps of my age have got sort of man boobs anyway, haven’t they, but I hadn’t got to that stage, you know? And they’re trying to make these boobs to get in this mammogram.

 

So they’re really kind of heaving you about?

 

Yeah, and they just squash it, and it, you know, I thought, “Oh, she’s gonna stop in a minute,” and it just kept going and going, you know?

 

So did that just really feel like the skin was getting pulled, then?

 

Yeah, yeah, yeah, yeah. It was really uncomfortable.

 

And did they do that on both sides, then?

 

On both sides, yeah, they done it on both sides, yeah. And it was really uncomfortable. 

Roy had to have further tests after his mammogram showed possible signs that the breast cancer had spread to his other breast. He was the first man in his hospital to have a stereotactic biopsy.

I had a mammogram, which is very uncomfortable.

 

Yeah.

 

Especially being a man, you’ve got nothing to put in there, you know, which makes it worse, you know? They’re trying to pull something together to put in there. So I went and had a mammogram on both sides, and then I went for a biopsy the same day, which obviously the lump was there, they found it and they diagnosed it immediately, and then I, they obviously told me there and then what it was – all on the same day, sort of thing, what it was, but they had found some crystals in the left side, which they were, you know, a bit worried about. So what I had to do, I had to go back and have a steriotactic table top biopsy. The first man to have it done.

 

Right, oh right.

 

I had a letter from them stating that I was the first man had this done, which I had done. It’s quite interesting, actually – even though it was happening to me, it was sort of quite interesting. But they found definite cancer crystals in the left breast, you know and I’m the only man there and there’s about a hundred women all sitting in the waiting room and me, you know? It was a bit daunting, really.

 

Then I had the biopsy – but it, apparently, they done all the – I mean, I thought I’d have the mammogram, they’d send me home, then they’d have a look at that and then I’d have to go back – but they didn’t.

 

You weren’t expecting the whole one stop?

 

They done that, the whole works in one day. I couldn’t have this steriotactic biopsy on this side that same day, I had to go back for that – but they done a biopsy on this side, and you know, and then they, the table top thing – and I was watching it all on camera, you know? And the little thing goes in and grabs bits and comes out.

 

Amazing.

 

Yeah, it really is amazing, yeah. But what it is, you lay on a bench, right, I don’t know if you know?

 

No, I don’t – please tell me about it, coz I don’t?

 

You lay on a bench, and you put your boob in the bit, there’s a hole in it.

 

This is for the table top, yeah.

 

For this table top, yeah, steriotactic biopsy or something – and you put your thing in, and they try and pull a bit, you know, yank it about a bit again. Then this little machine comes, they get this little machine and it’s like a little snake, really – then you can see it on the screen, on the big screen, and the chap’s looking at the screen, and this thing’s going round, and it’s…

 

So is he operating it, or is it…

 

No, it does it on its own.

 

Oh, it does it on its own, amazing.

 

Yeah, and it’s going round, and all of a sudden, they see a little bit what it wants, and out it comes, and then back in again.

 

So it comes, so it kind of comes out of the tissue, and then deposits that?

 

Yeah, deposits it in a little tub of stuff, or whatever, and then, in it goes again, and you see it searching around, and out it comes again. But it’s amazing, yeah.

 

That’s amazing – and is that uncomfortable?

 

No. No, it bruises you an awful lot, but I had, they give you an anaesthetic anyway, an injection, you know?

Yeah – so you had that after you’d had the ordinary biopsy, obviously before you’d had the mastectomy?

Yeah, I had that the same, the next day. I had the ordinary biopsy done both sides, one day, and then they – coz they was a bit worried, coz the bruise, the ordinary biopsy bruises you terribly, you know, you go all black – and they said, “oh, will you be alright having this done today, coz of your bruises?” I said, “yeah, just do it, you know?” So they just done it, you know? They said, “you can leave it for a couple of weeks.” I thought no, get it over and done with.

And so was it quite a nice distraction, being able to watch it on the screen?

Yeah – I never felt it, really, you know? Once they sort of deadened it, I never felt it until it was all over, and then it’s quite – it’s a bit uncomfortable for a couple of days. But yeah, it wasn’t any great drama, really. Obviously, when they said I’d got it both sides, obviously it spread, you know?

And so were they able to detect that from this steri…eh this table top test, rather than from the mammogram?

They couldn’t do it from the normal mammogram, or the normal biopsy.

That’s coz it was kind of early crystals, yeah.

Yeah, it was very early stages in the, but he seemed to think, because of the grade of cancer, that it should all come off anyway. He said it was the best option, with the grade of the cancer. He said, “if we do a lumpectomy,” he said, “I would give it a ninety percent chance it’s going to come back within a couple of years.” 

Right.

You know, so he said, “you’re just wasting your time, really,” you know? But a lot of women choose that option, because they don’t wanna lose their breast, you know what I mean? 

Yeah. And you just felt like you didn’t…

Oh, I said, “no, no” I said, “they ain’t no good to me anyway.” What good are man’s nipples anyway? You know? Always been a waste of time, haven’t they, really? I said “no”. 

 

Roy had a bilateral mastectomy and chest muscles removed on both sides. He had been working as a builder up until his operation but was not able to carry on with such heavy work afterwards.

 

See, coz what it was – I worked right up to the day of me operation, and I haven’t been able to work, obviously, I haven’t worked since. I was retiring age anyway, but I haven’t worked since. Whether it’s the sort of packing up work’s caused it, or whether that had anything to do with it, I don’t know.

 

What kind of work did you do before?

 

I was a builder.

 

Yeah.

 

What they’re doing over there was the type of work you know that type of stuff.

 

Right, so you’d have been used to being very physical?

 

Yeah, it was very physical, yeah.

 

Yeah.

 

Yeah. You know, and I mean, even at sixty-six, you know, when I was sixty-five, I got it when I was sixty-five. I mean, I did hope to carry on, you know? I always thought I’d carry on until I was seventy you know what I mean, no problem, but I couldn’t, you know what I mean? Once I got this sorted, that was sort of me working life over, you know? I had to pack up then, so I can’t lift things and that now.

 

Is that coz you don’t feel you’ve got the strength in the arms, or is it painful?

 

Well, see, I mean, see, I mean I’m used to lifting really sort of heavy stuff, you know, like kerbs and stuff like that, which probably weigh sort of 112 pounds, you know, type of thing, you know, which is heavy, you know? I mean, I could just lift them up and – but I couldn’t even lift them off the ground, now. But I think you’d get, coz I lost the muscles. I lost me chest muscles as well.

 

And that would have been on both sides, as well, just, yeah.

 

That’s right. Yeah – they sort of, he said to me, “We’ve had to virtually go to the bone.”

 

Yeah.

 

So I obviously lost me chest, but you do get a lot of strength from your chest, you know? Obviously a man’s mostly comes from his chest, you know? Whether it’s something to do with that – but you know, obviously I couldn’t carry on doing any physical work and stuff like that. 

 

 

After his bilateral mastectomy Roy didn't feel a need to have tattooed nipples, although he recognised it might be important for other people, particularly younger men.

I wouldn’t fancy being tattooed, really. It might hurt (laughing).

 

Well, you’ve had a couple of…

 

I’ve had tattoos, yeah. Yeah, no, I, I, no, I wouldn’t do that. I wouldn’t do that, coz a lot of women have it done, as well, tattooed back on, don’t they?

 

I don’t know, actually, coz I don’t know the different techniques that they use.

 

My cousin’s wife, she had it done on one side, and she had a nipple tattooed back on there.

 

Coz I think sometimes, they can save the nipple in the surgery?

 

Yeah, they can do.

 

As I say, a long way out of my expertise, but…

 

I mean, probably, if I sort of said well, “I don’t want to…” They could have probably saved this one, but I think this one had to go anyway coz the tumour was right in the nipple, sort of thing.

 

So close by, yeah.

 

Yeah – I think that one would have had to have gone anyway, but like I say, you know – especially at my, I mean, it might have been different if I’d been twenty years old, you know?

 

So you think a younger guy might find it…

 

Yeah – coz I mean, you know, I mean, all of us, when we’re young, are vain, aren’t we?

 

Yeah.

 

You know, whether you’re man, woman, or whatever you are – there’s always a bit of vainness about you, you know? But I think a younger fella might, I don’t know if I would have done when I was young – I don’t know if I would have worried then, or not, I really don’t. Might have done, I don’t know – but then again, we never had time for sunbathing, we had to go to work and earn, you know, and just work. That was your life, you know, just going to work, sort of thing. 

Roy really didn't want chemotherapy. The doctor supported his choice when he calculated that, for Roy, it only offered a small advantage.

So I obviously had the operation, and then I had to go back and see the oncologist, and I refused chemotherapy.

 

Did you?

 

Yeah. I refused the chemotherapy, but I had quite an intense course of radiotherapy.

 

So tell me a little bit about, you know, what made you want to...?

 

The chemotherapy. Actually, when he checked it all out, I always said, before the thing, I didn’t want chemotherapy – I really didn’t want it. Everybody I’ve ever, I’ve lost a lot of family with cancer over the years, and every one of them that had chemotherapy didn’t make it anyway, you know? And it’s such a, I mean, it’s worse than the illness, you know? People go through worse symptoms with chemotherapy, you know, and I said that I really didn’t want it. And I mean, if he had said, “Right, you either have it or you die,” obviously, I would have had it, you know? But you know, when I said to him, “No, I don’t want chemotherapy,” he said could he put me on a course of chemotherapy and then radiotherapy, and I said, “I really, really don’t want chemotherapy.” So anyway, he got on the computer and they come up – and all it was giving me was an extra two percent anyway. So it really did, you know, and then he agreed – well he said, “Well, really,” he said, “for what it gives you,” he said, “I don’t blame you for not having it.” You know?

 

So he supported your decision?

 

He supported it, yeah. He supported it. He didn’t at first, but once he checked it out, he supported it. He said, “It’ll only give you an extra two percent chance.” He said, “You’ve got, with your radiotherapy and medication afterwards,” give me eighty percent. With chemotherapy, it gave me eighty-two percent, you know, which I thought was too small a margin, really, to go through all that.

Roy now keeps his arms covered even in the summer to protect himself from the sun after his radiotherapy.

Basically – it’s like going in the microwave, really. But it darkened all this side of me chest.

 

And is that still darkened, or…

 

It’s still slightly a different colour. It’s not… I’ll show it to you if you want to see it.

 

Yeah.

 

It’s gone slightly darker. This side, they didn’t do any radio – didn’t need radiation, coz it was the crystals and they got it very, very early. Yeah, they got it very early. Yeah, and it’s…

 

And do you have to now be careful with exposing it to the sun?

 

Yeah, I mustn’t expose it, yeah, yeah, yeah, yeah. I have, as I say, even in the summer, I keep me arms covered. I don’t, you know, I’ve been – what it is, although I’m sort of fairly easy going and everything, I will do what I’m told, you know?

 

You sound like the ideal patient!

 

Yeah – whatever they tell me, you know, whatever they say, I will do it, regardless, you know what I mean? You know, I do exactly what I’m told, you know? You know, they said, you know, “Try not to get sunburn. Don’t let your arms get too sunburnt.”

 

And so they’ve told you to be careful about that for the rest of your life?

 

For the rest of me life, yeah.

 

Roy felt more emotional when he was first taking Tamoxifen, which he made a joke of in the end. He also suffered from itchiness but the Tamoxifen helped him to sleep.

I’m on tamoxifen, twenty milligrams, take one of them. They’ve had some weird effects on me.

 

Do they?

 

Yeah.

 

Tell me…

 

They do at first. They do at first.

 

So what sort of effects have you felt from them?

 

Well, the first effects I got was emotion. I mean, I’d watch Coronation Street and start crying, you know what I mean?

 

You see, I could do that, but then…!

 

Yeah, yeah, but I’m not like that, you know? It’s so different to my nature you know? I mean, I’m not that type of person, you know? You know, and I, or, see a dog die, you know, and think, “Oh,” you know what I mean? But it stopped now. I’ve got over it, now.

 

So how long would you say that lasted for?

 

Well, that lasted for about the first year. That lasted about the first year, but this last sort of six months, you know, I’ve been like, the only, I itch – it makes me itch, and it’s like Chinese torture when I start itching, you know? Places you can’t get to, I don’t ever scratch, you know what I mean? Down me back, you know – and the other sort of side effect, I do get a little bit of trouble with me arms. Me arms get very tired, you know, they ache. Whether that’s anything to do with it, I don’t know.

 

And so the tamoxifen, you’ve been on that for about eighteen months?

 

I’ve been, yeah. That starts a month after the radiotherapy finishes, tamoxifen. I’ve been on that, but I mean, I get on the sites, and lot of the women – coz it’s an hormone, but it is a woman’s drug, isn’t it, really – it’s a woman hormone drug. It just said it is a funny one to have to give you, but there’s nothing else we can give you. They looked at several other drugs what was a possibility, but I wasn’t receptive to them – and the type of cancer I had wasn’t receptive to them, so they said, “There’s not much point in giving them to you.” You know, so that, so they obviously put me on tamoxifen.

 

And have you had other side effects, then? You said you’d had the sort of itching and the emotional…

 

Yeah, you get a lot of itching, yeah.

 

The emotional side of things.

 

Yeah, but the emotional side of things has gone, now. I don’t get that now, you know? But…

 

Yeah – and that was making you feel just more tearful?

 

Yeah, it made me feel stupid, really, you know what I mean? You know, coz all of a sudden, you go from being a macho man to the big baby, sort of thing, you know what I mean? It was quite, it was quite well you know, and I’d be trying to hide it, you know? You’d sit there, and it’d suddenly come on silly, you know? You’d be you know, “God, my eyes keep watering,” you know? (Laughing.) Yeah, and it was quite funny, really – but that was basically it, really. The itching, I still get the itching quite badly.

 

Yeah, so were you relieved when that sort of emotional side of things went away?

 

Yeah, well I got used to it, really, you know? I mean, in the end, I made a joke of it, you know? I said, “I can’t help it, that’s how it is.” But I told the oncologist, and he said, “Yeah,” he said “We’ve had a lot of people say this can happen,” you know? You know, he said, you know he said, “a lot of women have said this can happen,” you know? But otherwise, you know, nothing bad, really. I can’t really moan. I can’t complain about it, you know? But I suppose, I’m sixty-seven now, anyway, so I mean, perhaps I’m expecting too much, you know? Perhaps that’s what happens to you when you’re sixty-seven. But it seems like old age and that’s come together, type of thing, and I suppose it affects you that way you know. I don’t feel like I’ve had cancer.

And are they recommending that you stay on the tamoxifen?

I’ve gotta stay on it for five years.

Five years, so you’ve got about another three and a half to go?

Yeah.

Yeah.

Yeah, about three and a half years to go on it. But they’re not a problem – actually, they’re a good sleeping pill, actually.

Are they?

Yeah, they make you sleep, yeah. See, what I do, I used to take them in the morning, and I would be quite sleepy all day – so I stopped taking them in the morning and started taking them at night, and I take it, within sort of half an hour, I’m (snoring noise), I’m gone, you know? So I use them as a sleeping pill, really. It’s quite useful, you know?

 

Roy accepted the advice to have a bilateral mastectomy but refused to have chemotherapy because the extra benefit of the chemo would be small for him and he had seen family members suffer side effects of chemo.

The surgeon, he gave me some options for what they could do or they couldn’t do, but I went completely on his recommendation. I never chose – I could have had a possible lumpectomy and then treatment, and what have you, or bilateral mastectomy, which I said to him, basically, I’ll go on his… on what he thinks. And he said it was such an aggressive cancer, that he thought the bilateral mastectomy was the best way, and me lymph nodes treatment as well – which I agreed to, obviously. Then they wanted to do a little bit of pioneering stuff on me, which I said, yeah you know, fine, no problem carry on.

Roy had a few 'snidey' comments from other men. He challenged one man's ignorance of breast cancer in men, pointing out that he was no less a man whether he had testicular cancer or breast cancer.

I said, “Well, how else can you explain it,” you know? Yeah, I’ve got cancer, you know? They diagnosed I’ve got breast cancer. That was the biggest shock was the breast cancer.

 

Yeah – for other people or for you?

 

I think for everybody – breast cancer? You know? And then, obviously, you get the snide remarks, “Oh, must be a bit effeminate or something like that,” you know what I mean?

 

Did you get that kind of reaction from a few people, then?

 

From one or two, yeah – one or two. I didn’t take any notice, you know?

 

Was that from people who had never heard of breast cancer?

 

Well no, I mean, most men don’t know, really don’t know anything about it, you know women do, obviously, because it’s, you know, like most women, when they get to forty, they start having their mammograms and stuff like that. See, what they’ve done – my daughters can have mammograms now, if they start as soon as they like, and whenever they like – well, virtually now, and they’ve said, you know, if they feel they need to have them done, just come and we’ll do them, you know? But no, I mean, you had one or two snide, silly remarks, really – not snidey, but just, you know… I said to one bloke, I said, “What are you thick? Are you ignorant or something, mate?” You know what I mean? I said, “So if I got testicular cancer, I’m more of a man than coz I’ve got breast cancer? What difference does it make?” You know? And he went, “well,” I said, “Well what difference does it make?” I said, “Whether I’ve got it here, or whether I’ve got it here? It’s still the same thing,” you know? I said, “What difference does it make? I can’t see what difference it makes,” you know? I mean, I didn’t think it was effeminate, at all – I didn’t feel effeminate coz I’d got it, you know? Just one or two sort of silly remarks, you know? But not…