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Steve - Interview 31

Age at interview: 58
Age at diagnosis: 58
Brief Outline: Diagnosed with breast cancer in his right breast in 2010 after consulting for pain in his left breast. He had a mastectomy, but did not need radiotherapy or chemotherapy. He is currently taking tamoxifen.
Background: Steve works as a graphic designer in the health industry, he has adult children. Ethnic background' White British.

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 Steve was having sensitivity and pain in his left nipple area and noticed that there were a couple of lumps there. He went straight to see his GP who referred him for a mammogram immediately after he returned from his holiday. Fortunately, the policy of his local health care authority was to do a bilateral mammogram. When he went back to the consultant for the results a week later he was told that he had breast cancer in his right breast which initially caused him some confusion. The lumps that he had originally consulted for in his left breast had already begun to get better. He could easily see the small pea-sized tumour in his right breast on the mammogram and the ultrasound images. He appreciated the straightforwardness with which he was told that he would need a full mastectomy.

He found his mastectomy remarkably straightforward. Within three or four hours of the operation he was walking around the ward and telling them what he had had done – most of the other patients on the ward that he was on had no idea that men could get breast cancer, although he had been aware of this himself. He experienced very little pain immediately following the mastectomy, although he did experience more pain when he got an infection which made him feel quite unwell for a couple of weeks. 
When Steve first started taking tamoxifen he got quite severe hot flushes and night sweats; he felt as if water was pouring out of him. Fortunately, these had settled down by the time he returned to work. He had a phased return to work, allowing himself to get over the extreme fatigue that he felt after his operation and to develop more strength and mobility in his right arm as he recovered from his surgery, because aspects of his work are quite physical.
Steve felt that he had had great support from his breast care nurse and very good treatment at the hospital. He also had good support from family, friends, colleagues and neighbours. The medical staff explained what to expect carefully. However, the way that much of the written information that he found was presented made him feel ‘second-class’ because it was so female-orientated. Throughout his surgery and afterwards he collaborated with the medical team so that a series of clinical photographs could be taken to help show other people what to expect when a man has a mastectomy. He wanted to do this because some of the existing images that he found on the internet were ‘horrendous’. 
 
 

Steve consulted for lumps under his left nipple. Luckily he had a mammogram on both sides which...

Steve consulted for lumps under his left nipple. Luckily he had a mammogram on both sides which...

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I’d been having a problem with my left nipple area, it was getting very, very sensitive, and I noticed that there were a couple of lumps there. So I thought, “Right, this needs looking at, I think”. And I was about to go away on holiday to Turkey, so I thought, perhaps I wouldn’t get as good healthcare out there as I would get here, so I thought, go to the GP, and he had a check around the area, he could feel the lumps as well. There were about three or four definite, hard lumps there which were very, very tender and painful – I mean, literally, even with the shirt on, it was painful. So he organised a mammogram for me, but in the meantime I actually went on holiday, and I did feel a little bit better. When I came back, I had the mammogram almost within a couple of days of me returning. I had to wait a week then for the results, and then I was called in, met my consultant surgeon, introduced to the breast care nurse, and I thought, “Something’s probably up here”, and he said he’d found a lump. And I thought, “Oh, right, okay” – so I thought, right, he’s found a lump, what does that mean, and he said, “We think it’s aggressive breast cancer.” Alarm bells were ringing again. And he said, “It’s in your right breast,” and I thought, “No, it can’t possibly be in my right breast, because my left breast is the problem area”. So I said, “Don’t you mean my left breast?” He said, “No, it’s definitely in your right breast.”

 
I’m keen on letting other men realise that, as long as you get this early, and present yourself early to your GP, then, you know, it’s a good prognosis, you know, I mean, you’ll be sorted. And obviously there are different levels of breast cancer, but in my case, I think – I’m not entirely sure – I think the surgeon said he estimated that I’d probably had a growth for about a year. So that was the size of a little pea, about that sort of size. But the lucky thing was that they did a mammogram on both breasts, because, you know, I know that in certain health authorities they’ll only mammogram you on the breast that is presenting with a problem. So as I had the breast problem on this side (left), it may have been missed completely. So luckily, for our health authority I was mammogrammed on both sides, and, you know, luck of the draw.
 
So the lumps on the other side all proved to be...?
 
Well, to be quite honest with you, I would have thought – they proved to be just duct growths, that were, just normal growth that was giving me pain. I would say, by the time of the operation, no problem at all [indicating left side]. I could still feel a little bit of the lump, you know, the bigger lumps, but the others had subsided, and my nipple, which was the big pain problem, was as it is now, it’s no problem at all.
 
So that, in a way, sounds like that was just a very fortunate coincidence, was it?
 
Pure fluke, as my surgeon says – “This is very fluky!” (laughing) We were all amazed, I think, that I had no symptoms in my right breast as well.
 
So it may have gone unnoticed by you for quite some time afterwards.
 
Absolutely. Yeah. Possibly. 
 

Steve describes what it was like to have the biopsy and mammogram and how he was interested in...

Steve describes what it was like to have the biopsy and mammogram and how he was interested in...

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And what about the experience of the mammogram? I don’t think any of us find them comfortable but I mean, for a man they’re…?

 
Right. Yeah. Because of the physical lack of tissue, the breast is squeezed between two plastic plates, so literally, for me, it was quite – I can’t say it’s painful as such, it’s quite awkward, because of the angles, the different angles that they’ve got to take the actual shots. And it was uncomfortable, I think is the phrase, it’s not a painful procedure, but it certainly, you know, I was on my tiptoes at one stage because they tilted it, and I thought, well, I’ve got to go with this!
 
(overtalking and laughing)
 
And it was more painful because I had the pain in this breast, I think that was more painful, but I think if I’d have presented without the, sort of, the lumps, it would have been more, much more comfortable. Didn’t feel anything on this side.
 
I was going to say, so the left side, was that...?
 
The left side was very straightforward, yeah. Yeah, sure.
 
And you were saying that the biopsy itself was quite uncomfortable, you’re saying cos that went into the nipple?
 
Yeah. They put a topical anaesthetic, you know, a cream on you, to sort of null the pain at the, sort of, the biopsy site. And again, I only had a couple of minutes, you know I had no warning that this was going to actually take place, so I had no thinking time to, “Oh, I don’t like this,” I really went from one room straight into the next room, and lying on a couch, but the procedure’s very well explained to you, the biopsy gun makes, you know, it is a gun effectively, you know, it makes a noise, like a cap gun going off, so they actually fire it for you so that you can be aware that that’s the noise you’re going to hear. And the needle goes in, and I was more interested because it was on actually on the ultrasound screen, so...
 
So you were kind of watching it as it happened?
 
...as the nurse was doing it, I was watching it, and going in, and they did three points around the actual tumour itself, and then when the gun goes, it’s a bit of a shock, but, I mean, it’s a dull pain, it’s not a nasty pain, I wouldn’t class it as that. And then you just wait, then, for three or four days, while they do the histology and you get the results. 
 

Steve was grateful that he had been informed of his diagnosis in a plain, straightforward manner....

Steve was grateful that he had been informed of his diagnosis in a plain, straightforward manner....

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My own experience was that all the health professionals that I came against knew their job 100 per cent, there was no ifs and buts about it, they all said what I wanted to hear, which was great. The way that the news was broken to me about the operation, if it had been said in a loose way, I would have not accepted it, I don’t think. It was because it was plain and straightforward, to the point, “You are going to have a mastectomy, that is what is going to happen,” you know, “I haven’t got a choice in the matter,” to be quite honest with you. Well, I have, but it’s not a good choice. You either have it, or you suffer the consequences. So I was really grateful that there was no, you know, no punches spared. But it meant a lot to me, on reflection. Not necessarily on the day, because you don’t want to hear the words anyway, when somebody says you’ve got, you know, aggressive cancer – the word “aggressive” was quite poignant – but I think it’s the, the fact that everybody – the breast care nurse went though everything with me, the fact that I had more-or-less 24/7 support from her specifically, I was dealing with just her, you know, we got friendly, it was a nice environment. You didn’t, she didn’t – she wasn’t a “healthcare professional” in my mind, she was a friend at the time. And that was very important to me. So, you know, be a healthcare professional, but if you’re dealing with a patient, you’ve got to be their friend as well. Especially in this sort of, this scenario. And I work in a hospital, and I do see junior doctors, and I know that they do say the wrong things, and it’s just because they don’t get feedback. I think, once they’ve had their first wrong dialogue with a patient, they learn very quickly. But all the people I dealt with were spot on. 

 

Steve was ‘comfortable when he first heard, then became quite emotional when he misheard further...

Steve was ‘comfortable when he first heard, then became quite emotional when he misheard further...

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So I had to wait, then, another three days – I think it was three or four days – called into the breast clinic again, where I saw the surgeon, and then he sort of broke the news that it was definitely aggressive breast cancer.

 
Right.
 
I don’t think I was worried at that stage, because I felt quite comfortable, you know, everything had been explained to me quite well, so I was very comfortable about it. More involvement with the breast nurse then, she sort of explained what the procedures were going to be. And then the surgeon said, “Yes, we’ve got to do a full mastectomy, basically because with men there’s very little tissue, so they have to play safe and take what they can out.
 
So as I said I waited a week, called back into the breast clinic, and that was quite an emotional time, because I thought, this is going to be the point where I either have chemotherapy or radio therapy, and I was convinced I was going to have one or the other, and it’s quite funny, cos I misheard the surgeon, when he said, “It’s all clear,” I don’t know what I thought but I – I did get quite tearful, I was quite, quite emotional, cos I’d thought, ”Oh no, this is going to be a long slog,” I really wasn’t looking forward to any more treatment, to be quite honest with you. But it was an all-clear all the way down the line, and he said, you know, “There’s no more...” I said, “Well, what sort of treatment am I going to have,” and the only treatment he said was, “Well, you’ve got to take tamoxifen for about 5 years, which will obviously, you know, stop any further cancer cells growing” – or try to – and then I sort of changed from being quite miserable to sort of quite euphoric really (laughing).
 
So it was immediately after that, and then did that carry on for a while?
 
Yeah, I mean, I was quite happy, I sort of bounced out of there, really. But I had seen people going in and coming out with probably different results, so I was a little bit concerned going in there. And then for me to totally mishear what he said, it hit me like a brick wall. It was the first real emotional impact that I’d had, all the way through the treatment and sort of diagnosis. I’d more or less taken everything as it happened quite well, to be quite honest with you, but, I mean, that was the most, it hit me like a brick, and I thought, “Oh no, this is, you know, possibly a problem.”
 
It was so straightforward, I, you know, I look back on it, and I think, well, it was, it just happened and went. So the impact with not having any sort of follow-up chemotherapy or radiotherapy, probably didn’t hit me until around Christmas time. That was quite an interesting time, cos I’d had the surgery in September, early September. When I got to Christmas, I started thinking of my family, and all the things that are sort of precious to me, and I was thinking whether or not it had gone a different way, I imagine that I hadn’t been diagnosed, or I had to have radiotherapy, or chemotherapy, I would have felt in a totally different way. But I really, I dunno what I’m really saying here, it’s sort of, the impact of it all, because I didn’t have any impact during surgery, the impact in my head hit me around Christmas time, and I really felt sort of quite you know powerfully aware that I’d had breast cancer. 
 

Steve developed an infection about a month after his mastectomy. He felt quite unwell, but the...

Steve developed an infection about a month after his mastectomy. He felt quite unwell, but the...

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And then it was just the road to recovery then, over a period of weeks. I did have an infection in the drain, that did cause me a bit of problems, I was quite unwell for a fortnight with that.

 
So was that pretty much immediately after you got home?
 
No, no, no, no. That was possibly about the fourth week? Because with the drain you have a certain amount of fluid every day, and hopefully it’s supposed to get less and less, to a point where you don’t need the bag, collection bag any more. And after the first two days I was doing it all myself, although the community nurse was coming to see me to check on the wound. There were no problems with it, it wasn’t seeping, everything was right, the stitches were right, everything was quite good. So I was getting more and more confident every day that, yeah. I didn’t have any worries, until I started getting unwell with the drain, that was really the only issue I had with the whole procedure.
 
So how did that manifest itself then?
 
I was getting a lot of pain, and I thought it was to do with the surgery, but it wasn’t, there was obviously, there was a bit of swelling under the arm, they put me on antibiotics, and that possibly kicked in after about a week, and I felt, I just felt very unwell. Difficult to explain what I felt like, but it, I knew something wasn’t right from the very, you know, from the beginning of the infection, there was something not right. And it was quickly diagnosed, I went in to the clinic and they checked it over, asked me to come back in a week after I’d been on antibiotics, and I was obviously getting better.
 

Steve described getting the movement back in his arm over the 6 months since his mastectomy. He...

Steve described getting the movement back in his arm over the 6 months since his mastectomy. He...

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I was told that obviously if I had any problems with the tissue area, that I should go back, but I haven’t. It’s still, it’s a funny sensation, for people who’ve not had surgery, it’s a little bit like having sunburn.

 
Right.
 
Not so much across the front of your chest, cos that’s healed really quickly, it’s where there isn’t any fat supportive tissue over the muscle in the underarm area, where they took the lymph, the second lymph node out – that is still quite a tender area. It’s not one that you would sort of want to touch a lot. But I’ve had physiotherapy, and apparently manipulating the small muscle on the breast helps with that. I’ve been doing that a lot. But I haven’t had any real pain. It’s more not being able to move your arm – you know, I have full rotation now, which I didn’t have before. Takes, you know, a couple of months for you to get that back, you know, about four months to get that back. But it’s a matter of, you go to reach for something, and you can’t actually do the full reach. So you’ve got to actually support the muscle, and, you know, eventually you do get further and further, back to normality. So I think at the moment I’ve got about, probably about 95 per cent of the rotational movement that I had before. So quite comfortable with that. And I can life – you’re not supposed to lift heavy weights for six months but to be quite honest with you your body tells you whether or not you can or can’t, you know, you’re always aware that you possibly can’t do something, so you never do lift anything too heavy.
 
But because of the recovery process, you have to do physio, you have to do exercises, just to, you know, if you hadn’t done that, or if I hadn’t done that, then the arm wouldn’t, I might be possibly not, you know, I wouldn’t be functioning like I am now. You need the exercises to free up the area. The lymph tract is still very tight, and that is just because everything is in a tighter situation than it was. And there’s no fat to buffer anything, which I’ve got on this side (indicating left). So I’ve just got to be aware of that, the skin moving against muscle tissue, instead of being buffered by fat.
 
It’s very hard to imagine what that feels like. It’s just a…
 
It’s just a very raw sensation. It’s not a painful sensation, it’s a weird sensation, if you’ve not experienced it before.
 
And has that changed over the six months, or is it...?
 
No, it’s pretty, I think, once I got over the infection, which was quite painful, it sort of settled down quite well, and, you know, I can touch it now – I would say just after Christmas it was still very, very sore, and it is just like having severe sunburn, that’s what it feels like. It’s very topical, very on top of the skin pain, not a deep pain. But since I’ve been doing muscle manipulation, the pain is a little bit deeper. But it’s not a bad pain, it’s a pain that you know you’ve got. But day-to-day, you forget about it, you just, you know, if you sat down and said, “Am I in pain?” you’d think about it and say, “Yes, I’ve got a bit of pain there.” But it doesn’t disrupt your life at all. It’s pretty good.
 

Steve hadn’t wanted a nipple tattoo. He didn’t want the pain and he didn’t mind his scar being...

Steve hadn’t wanted a nipple tattoo. He didn’t want the pain and he didn’t mind his scar being...

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And did he discuss options afterwards? Was there any talk of any reconstruction, or have you ever felt any need for that?

 
I was offered a tattooed nipple, which I thought hilarious – I thought that was really great. I could have any colour I liked, I presume! But from my point of view, the breast care nurse talked to me about that, and said, you know, did I want to go down any of those avenues, and I said, “No,” I think because I’m – even though I’m 58, and my breasts have grown a little bit, I didn’t have huge man boobs. I didn’t think there was a need for me to have any reconstructive surgery. The actual – I’m a hairy person as well, so a tattooed nipple would have been a total waste of time in a couple of weeks, because the hair would have grown over it. I didn’t fancy the pain of having a tattoo – which is funny when you have full surgery, and you worry about the pain of a tattoo! But, literally, no other issues. I’ve been swimming in a public pool since, I’ve got no qualms about my scar being on view. I know it’s different for a woman, obviously, but from a man’s point of view, you can always say you know, “Look at my scar!” I think, you know, it’s one of these things, isn’t it?
 
Men like showing off their scars?
 
Yeah, showing off, yeah, “Look at this scar!” You know. So there’s no...
 
So you haven’t felt at all self conscious, or any need to feel self conscious?
 
No, not at all. Literally. I mean, from the point, when I said earlier, about showing my, you know, I took my, opened my shirt on the bus. And people are looking on the bus, and quite interested.
 
So you educated a few people!
 
So I educated quite a few people, yeah, late at night, yeah. Quite funny! But – no, I’ve got no qualms about it. But I can appreciate that there will be people, men who don’t want to bare their chests, but what I say is, you don’t look that different, because you haven’t got big breasts in the first place. It’s just a flat version of the other side, literally. 
 

Steve had quite dramatic hot flushes when he first started taking tamoxifen but these quickly got...

Steve had quite dramatic hot flushes when he first started taking tamoxifen but these quickly got...

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I started on tamoxifen more or less as soon as I got home from surgery, and I was told to expect hot flushes, but, and then when I had them, I had them! (laugh) But I’m used to it now, I, well, to be quite honest with you, if I get one a week, now, and this is six months after surgery, they’ve had no, I’ve got no obvious side effects with tamoxifen.

 
That’s great. So, to start with, did you have a lot of hot flushes, then, or were they just very extreme..?
 
I was getting them, I was getting about three or four a day, and I was just, it was, you know, the perspiration was just pouring out of me, and I would have to change my clothes, it was that bad, I was just like someone had chucked a bucket of water over me. And that was three or four times a day. Quite uncomfortable feeling, as well, feeling you’ve, I felt quite faint, you know, light-headed with them. And they’d come on with no warning, and then suddenly you’d just be, “whoosh,” and then they’d go. And, you know, it was come and go without any warning, you know.
 
So you said that you’d actually done very well on the tamoxifen, that, you know, after the hot flushes...
 
Yeah, I mean, no after-effects. I take one tablet every night.
 
Does it affect your sleep at all, or anything?
 
No, not at all, no. In fact, I think if I get one flush every other day, and it’s a very short period of being hot and bothered...
 
So they’re not of the same intensity as those ones that you described?
 
Oh, nothing like it, no, no, totally different. I mean, the first, I think, first month or so, I was getting quite horrendous ones, and I thought, “Ah, this is going to be not too pleasant!”
 
So did you think you’d have to have five years of that!
 
Well, it’s a matter of where you are. If you’re, you know, sitting on a bus, or in work, in a meeting, and suddenly you go, “whoosh,” and you literally, it is absolutely you know uncontrollable sweating.
 
And that’s all over your body?
 
And your whole body just goes, “whoosh.” And it is, it’s like someone’s thrown a bucket of water over you. And I thought, “Oh no, I don’t want, I don’t want this.” But they just got less and less frequent, and less powerful, to a point now it may last five minutes, but I don’t sweat, I just feel a little bit uncomfortable, it’s a little bit of a fainty sort of experience. But nothing, you know, even if you’re driving it doesn’t affect you, so you could do it, you know, no problem.
 
So those first ones that you had, which were very intense, did they last for a fair bit longer than five minutes?
 
Yeah, quite a long time, yeah, it would be 10 minutes, quarter of an hour, and you really just feel out of it. A very uncomfortable feeling. But it’s purely because you’re just soaking. And then you’ve got to go and, you think, “Well, how long is this going to last,” you’ve got to wait for it to finish, obviously, before you change, so, you know, it’s time out of your life, effectively, you can’t – you’ve just got to get on with it.
 
So did you have to do, you know, just quite practical – at that time you weren’t back at work, were you?
 
I wasn’t back to work, so I was at home, yeah.(overtalking)

So you didn’t have to take a spare set of clothes with you to work and...

No, it was okay. But I thought, if this continues into work, that would have been a problem, but it wasn’t. 

People would have thought you were trying to show off an extensive wardrobe!

Yeah, yeah exactly yeah, yeah, take three changes of clothing in, yeah! But it wasn’t to be, so...

And have you been, were you affected by those at night, or was it mainly during the day?

It was at any time. There was no rhyme or reason, you know, I thought that maybe you saw a pattern, like circadian pattern, but it, there, there wasn’t.

But otherwise you’ve been, you’ve had no side effects from the tamoxifen at all?

No side effects at all. I tend not to read up on side effects for tablets, otherwise you sort of think, you know, you invent side effects, I think. It’s probably best just to take it as it happens, and if it happens, it happens.
 
 

Steve felt that the surgeon explained that he would need a mastectomy ‘very professionally’ and...

Steve felt that the surgeon explained that he would need a mastectomy ‘very professionally’ and...

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He said he was going to do a full mastectomy, it was very professionally put to me, unequivocal, no messing about. I don’t think you can flower up those sort of procedures. You’re going to have a full mastectomy, that’s what it is. You know, you can’t say, “Well, I’m going to cut a bit out, and maybe I’m going to need to cut a bit more” – you can’t say that, you – a full mastectomy says what it is. And I was comfortable with that. It was a shock, but I mean, you still think, “Well, right, that’s what’s got to be done, that’s going to save me, I want to live my life.”

 
So there wasn’t really any need to have, you know the decision in a sense was quite straightforward, then, it was a strong recommendation from him?
 
Oh, yeah. I mean, it wasn’t even a recommendation. I mean, he said, you know, “You’re going to be coming in three weeks.” Right, okay. Yeah. I didn’t have – there’s none of this, “Do you want the operation?” I don’t think that ever came into it at all. It was, “You are going to be coming in three weeks, and we are going to do – I am going to do a full mastectomy of your right breast!” And that was it. And I just… I knew, when he introduced me to the breast care nurse, I thought, “He’s not going to introduce me to a breast care nurse if I’m not going to have surgery.” So I knew, straight away. So, an immediate sort of feeling, yes, that’s got to be done.
 
And did he discuss any other options? I mean, so, he didn’t give you an option between a lumpectomy and a mastectomy?
 
No, he told me straight that there was no way that he could do a lumpectomy, because of the actual physicalness of the actual tissue. It wouldn’t be effective, and he had to do a full mastectomy. And it was no...
 
And did he discuss options afterwards? Was there any talk of any reconstruction, or have you ever felt any need for that?
 
I was offered a tattooed nipple, which I thought hilarious – I thought that was really great. I could have any colour I liked, I presume! But from my point of view, the breast care nurse talked to me about that, and said, you know, did I want to go down any of those avenues, and I said “No.”
 

Although Steve had felt ‘second-class’ when reading information about breast cancer, he had very...

Although Steve had felt ‘second-class’ when reading information about breast cancer, he had very...

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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.
 

Steve found very little information about men’s experiences of breast cancer. The ‘female...

Steve found very little information about men’s experiences of breast cancer. The ‘female...

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Did you feel like you had access to all of the information that you wanted and needed at various stages? How, how did you find that?

 
Well, firstly, I knew, obviously, that men could get breast cancer, so I knew there was information out there – and of course, the first thing you do is Google it, and you instantly find there’s very little actually out there pertaining to men. On the main breast cancer sites, you know, on some of them you’re lucky to get a paragraph of text pertaining specifically to men, you know, with breast cancer. And it’s not very helpful, because you’re sort of guided towards the experiences of women. One of the pamphlets I had was instructing me where to go to get a new bra fitted – which I thought perhaps that wasn’t me, you know? And you should really have pertinent information. I work as a graphic designer in the health industry, and I know that I wanted specific male-orientated information. Just to do with males. I didn’t want to know about what women felt, or had, or whatever. I needed support myself. And the more I looked into it, I realised that there was so little out there. You may get a glancing bit of text in the websites, or whatever you’re looking at, but it’s certainly not as covered in any shape or form as female. And they don’t write it in a non-gender way, so that, you know, you’re not talking about “a patient with breast cancer” – it’s always “a woman with breast cancer” – and that, I feel, they could easily address the situation by making it non-gender-specific in the areas that are common to male and female. I mean, it is the same disease, it is treated exactly the same way, but why is there no dual treatment in the sort of information that you get? That was – that concerned me a bit.
 
That would actually have the dual function of making women aware, as they were reading about their own treatment, that men could...?
 
Exactly, yeah, sure. I mean, women – I’ve spoken to a lot of women, and I’ve said, “I’ve had breast cancer,” and, “Wow, you know, I didn’t know that could happen.” They just don’t see it. And men certainly don’t look at breasts as breasts – their own breasts, as breasts. So it was interesting that there was very little information out there. I had one specific brochure from the breast care nurse that was for men, written all the way through, just for men.
 
And was that something that was written locally, within your hospital, or by one of the breast cancer organisations? Breast Cancer Campaign or something?
 
No – no, no – I can’t remember who wrote it, but it was a specific breast cancer – it was, you know, about 50 pages long, had a lot of quotations from men. Very helpful reflective reading as well, to go back to it and read it again, to see if you’d missed anything in your sort of treatment or whatever. You tend to do that, I think to make sure that you are up-to-date with everything.
 
So that turned out to actually be potentially the most useful source of information for you.
 
I mean, literally – you know, 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 fe
 

Steve thought information on breast cancer could easily be rewritten to make it relevant to men...

Steve thought information on breast cancer could easily be rewritten to make it relevant to men...

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And again, just going back to what you were saying before about the other information for men with breast cancer, or the lack of it – did that have diagrams in?

 
All women!
 
All women.
 
You’d think they’d make them so they’re gender non-specific, but no, it’s all women. And they would have little clauses, like, pertaining to women, which had no relevance to men, which I thought, “You could rewrite this so simply.”
 
Yeah. So what sorts of things might they say?
 
Whereas it was... I’m trying to think now what it was. There were certain instances where I thought, well, yeah, they’re talking about women. “You may feel a bit weepy”. And at no stage did I feel weepy, surprisingly. But perhaps the hormonal thing, for women, was kicking in at that time, that I didn’t experience. So, I remember the weepy bit. I can’t think of anything else offhand. But there were certain things that were written down that I thought, “Well, they don’t pertain to me at all.” But that was a general overview, as well, all the literature.
 
Well, I’m working with the breast care nurse, now. We’ve had serial photographs of me before the operation, a month after – a week after the operation, a month after, three months, and now at six months, showing the stages with the scar tissue in a clinical sense. So we’re going to compile them, so if men want to see what their procedure is, then, you know, they can be shown. Cos literally, if you Google the words “male mastectomy”, there are very few what I class as good instructional images that give you an idea of what you’re going to look like – some of them quite horrendous, and have no bearing on 90 per cent, probably, of the surgery that occurs. So, you know, I personally felt that I was in a position where I could have photographs taken of me – well, clinical photographs taken of me at various intervals. So that’s what we’re going to do. And hopefully rearrange some of the literature to suit, you know, both male and female. 
 

Steve had fantastic support from family, friends and colleagues. He told his colleagues as soon...

Steve had fantastic support from family, friends and colleagues. He told his colleagues as soon...

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And, yeah, the support was fantastic, really.
 
That’s great.
 
And again, my family rallied round, and I was looked after very well by my son and daughter, and my other friends. I mean, they just, you know, endless queues of people coming to see me, so that was nice.
 
That’s really nice. It’s great to feel that kind of support at these difficult times.
 
Yeah the support factor, yeah but I mean, they can’t do anything apart from be there for you, I mean, that’s what the important thing is.
 
Yeah. So at what stage did you tell your son and daughter?
 
I didn’t want to do it over the phone. I wanted to speak to them in person. So, my son I knew was working that day, on the day of the diagnosis. It was quite weird, cos I was actually in work at the time, in the same hospital. So I actually went from the clinic up to my workplace, and I had to tell them, I mean they knew I was going in for something, and that was extremely emotional. That was... quite emotional.
 
Because you’d just received such a huge piece of news. And were they – they were all sort of waiting for you to come back, pretty much, were they?
 
Well, they were quite shocked – as I was, I think –I was more, more shocked at trying to tell them. It was very – I just couldn’t get the words out. I was, you know, sort of quite – unlike me – I was quite quiet. It was only a small group of the, my immediate crew.
 
It sounds like you haven’t had very long to kind of prepare how to say, how to actually say it.
 
No, it was quite difficult, yeah. But the support was fantastic, you know. they did all the sort of groundwork for me, they made sure, you know, we’ve got quite a big department of people, so when – I stayed in work all day. I didn’t think I would, but I did. But they disseminated the information around quite quickly.
 
And were you pleased not to actually have to keep on telling people over and over again yourself?
 
Yeah. At that – on that day, on that day, it was quite difficult to deal with it, I think. Reflecting on it. But once I’d said to my crew, you know, I had breast cancer, that was the wow factor for them. And then, we got over it, and, you know – yeah. It was just emotional. 

 

 

Steve had known men could get breast cancer but he found 95% of people initially disbelieved him....

Steve had known men could get breast cancer but he found 95% of people initially disbelieved him....

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And is that both men and women that you’re working alongside?

 
Yeah. Yeah, yeah. And again, I mean, I spoke to quite senior people in the hospital, and a lot of them were quite surprised that men could get breast cancer. That was an issue, to me, I thought, “Well, people must be told about this.”
 
So how about you, yourself, before you got your symptoms and everything – were you aware of the fact that men could get breast cancer or…?
 
Yes, I’d actually worked for a cancer research institute, so, you know, a private cancer research institute, and I, because of my work, I’ve been involved in giving that sort of information out. So I was quite au fait with that.
 
Right. So it wasn’t, you know, a complete shock to you that men could get breast cancer, obviously being diagnosed yourself is an entirely different thing.
 
Well, I think the blow was definitely lightened because I was aware that men could get it. It wasn’t a wow factor. It was a “oh” factor, I think is how I saw it.
 
But would you say the majority of people that you came across then were really surprised to find that you as a man had got breast cancer?
 
I would probably say about 95 per cent of the people I spoke to, yeah.
 
And…
 
Some didn’t believe me! And I actually, I was on a bus, coming back from town, met a friend of mine who I hadn’t seen for a long time, and he said, “Oh, I haven’t seen you for a long time,” I said, “No, I’ve been, I’ve had an operation, had breast cancer.” And he looked at me, and he said, “Nah,” just didn’t believe it. So I actually took my shirt off and showed him. And then he believed me!
 
So did he you know just openly challenge you, did he... how did he express that disbelief?
 
He did challenge me, yeah, he said, “Nah, you can’t have,” and I said, “Yeah,” I just showed him the scar – and that was a wow factor for him. He was really nonplussed by that.
 
So how did he react once, having disbelieved you, and then seeing the scar? Did he...?
 
He... every time I saw him since, he was really keen to find out, you know, how my treatment was going, and, you know, how I was feeling, and everything. So, you know – I think, when you have something like this, it brings friends out of the woodwork that you don’t, you know, you don’t realise you’ve got. Certainly the, my close network of friends living around here, I mean within, probably, a day, everybody in the neighbourhood knew that I’d gone in. So, you know, jungle drums were working! And I had, you know, it was really nice, cos when I came back, everyone was really surprised that I’d come back so early.
 
I’m not surprised!
 
And, yeah, the support was fantastic, really.
 
That’s great.
 
And again, my family rallied round, and I was looked after very well by my son and daughter, and my other friends. I mean, they just, you know, endless queues of people coming to see me, so that was nice.
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