John P - Interview 25

Age at interview: 65

Age at diagnosis: 63

Brief Outline: Diagnosed with breast cancer in 2008, after initially being a bit reluctant to go to the doctor. He had a mastectomy, followed by radiotherapy and tamoxifen which he felt was responsible for him gaining some weight.

Background: John is a retired motor car electrical inspector. He is married and has 2 adult children. Ethnic background' White British (English).

More about me...

 John P was having a shower and happened to look in the mirror and thought that his right nipple seemed smaller and flatter than his left nipple. He checked it again a few days later but said he didn’t take too much notice of it ‘being a male’. In retrospect he thought there was some discharge which had made his nipple slightly dry and crusty.

A few weeks later he mentioned it to his wife who looked at it and told him to get it checked out. Sometime later his daughter commented on his nipple when he was working in the garden bare-chested. She also told him to get it checked up and that it was possible for men to get breast cancer. He already knew this because his wife had talked about a couple of men with breast cancer that she had met during her work in a hospital.

Although he knew that men could get breast cancer, he says it didn’t register that he could have breast cancer. A nurse saw his chest whilst he was attending for a routine blood pressure check and suggested that he make an appointment with the GP. The GP arranged a very rapid hospital appointment for him for a biopsy and mammogram, and a week later he was told that they had found cancerous cells. He went on a pre-booked holiday before going to hospital for his mastectomy.

After he was discharged he needed to go back to the hospital every couple of days for a while to get fluid that was building up drained. At this time he sometimes felt as if he wished he had never gone to the doctor – he felt sometimes that he was always at the hospital whereas before his only problem was a flat nipple. The regular trips to hospital for radiotherapy also made him feel that the illness was taking over this life.

He had great support from his wife and family, and from the breast care nurses. He felt that he could phone them up anytime he was worried about anything. Initially he sometimes felt self-conscious about taking his shirt off in public, but his granddaughter’s positive reaction helped him to get over this. He had some mixed feelings about telling people about his cancer. On the one hand he wanted people to know that men could get breast cancer, but they sometimes seemed to feel embarrassed and not know what to say when he told them. One of his male friends struggled to ‘get his head around’ the fact that men could get breast cancer. He feels that breast cancer in men should get more publicity and sometimes feels annoyed about it, but he also thinks that it must be devastating for a woman to lose a breast. His experience of having night sweats whilst taking tamoxifen and having mammograms meant that he felt he could have some sympathy with women having these experiences.

 

One of John's nipples became flatter. He showed his wife, who worked in a hospital and had met a man with breast cancer. In retrospect, he realised there had been some discharge.

Well my story, I think it’s a little bizarre in a way, Kate the problem as I call it, started, I call it a problem because breast cancer was the furthest thing from my mind when the problem, as I call it, started. I was in the bathroom, stripped off for a shower or something, and I happened to look in the mirror and I thought, ‘that right nipple, it seemed to be slightly smaller and flatter than the other one’. But, being a male I took no notice. Two or three days later, another look, I said honestly I took no notice whatsoever. I don’t know what was going on inside my brain, what I thought it was, I haven’t got a clue. Anyway a few weeks passed, and I said to my wife one night, we were getting undressed ready to go to bed, and I says, “Look at that nipple compared with that one”. And, “Oh my God” she said “you need that checked out”. [name] works at the hospital so she, you know. So being a male, “Yeah, yeah, yeah, yeah, yeah, yeah ok love ok”.

 

And had you been well up until that point you’d had no, no other symptoms?

 

No problems whatsoever, Kate. The surgeon, he asked me, he said, “any pain, any discharge or anything”. You know. And with hindsight, but I didn’t realise it at the time as I say, I think there may have been a slight discharge because some mornings I used to get up and it was a little bit crusty, but I think I put it down to, ‘oh a bit of dry skin or something’. In fact, I think for a while I used to put cream on it to, you know, dry skin. But with hindsight it may have been a slight discharge, but I mean it wasn’t you know, my pyjamas wasn’t soaked or anything like that. But that was the only thing, but as I say I John never put two and two together at all. 

John's wife and daughter both knew men could get breast cancer and encouraged him to see his GP. They made sure the nurse saw his nipple when he went for a routine blood pressure check.

The next morning she says, “John I’m telling you, you need to get that checked just to be on the safe side”. “Yeah, yeah, yeah”. Anyway what I didn’t know was, she’d told my daughter, and a couple of nights later, a lovely summer’s evening, I was out cutting the back lawn. And I’d got my shirt off, and my daughter came down the back path and, straight away she said, “Dad, that wants looking at,” she says “because I’m telling you straight men can get breast cancer as well as women”. So I says, “Yeah ok love, ok”. Anyway she kept on to me all that night, “Dad are you going to go to the doctors and have that looked at?” I said, “Yeah, yeah, yeah, yeah, yeah”. And I’ll tell you a funny story attached to this part, in a moment… So, a couple of more weeks probably passed and they kept on to me and I have to go to the GP’s surgery periodically to have my blood pressure checked. So the practice nurse, I said to my wife and my daughter, I says, “To keep you two quiet, I says next time I go to see the nurse, I’ll show her see what she thinks”. Anyway a few weeks later I had to go for a blood pressure check, and, the nurse, smashing girl, you know “you ok, blah blah blah ok”, “yeah” I says, “When you’ve taken my blood pressure I want to show you something see whether it’s worth bothering the doctor with”.

So anyway she took me blood pressure you know, that’s fine. She’s now “what’s the problem?” So I undid me shirt and I says, “Look at that nipple compared with that one”… So she says, “Well ok” she says, “Jump up on the bed” and she pressed and what you called it, (cough) – and I’ll never forget she says “John” she says “I think to be safe we’ll get the doctor to have a look at that, just to be on the safe side”. And it still never registered big time that it was something serious you know. I think I thoroughly expected the doctor to say, you know, that’s, that’s fine that’s no problem. Anyway she made an appointment to see my GP, [name of GP] and I went a few days later. And she, you know she says, “You’re a bit concerned about one of your nipples John” she says “Let me have a look”. She had a look, up on the bed, pressed you know, felt, by this time, the nipple had gone a little bit on the hard side compared with the other one, but it still no. So anyway she says “John” she says, “to be safe, I think we’ll send you to the hospital and get the hospital to have a look at that”. So I says, “Ok [name of GP] ok”. Anyway she says, “I’ll see to it and the hospital will be in touch with you”. Anyway I was home about two hours from the GP’s surgery and the telephone rang and it was the hospital. “Mr (Name) you saw your GP this morning”. So I said, “Yes that’s right”. She said, “Well I’ve got an appointment for you”. And then something just slightly, I thought well, ‘My God that’s very quick, you know for a hospital, normally you make an appointment and you don’t see anyone for six months or something like that’. Ok, fair enough.

So anyway she gave me the appointment, and it still never registered with me, this sounds bizarre as I say, I don’t know what was going on in my mind, certainly not breast cancer, and my wife did say that she says “John,” she says “you know, are you prepared for what you might be told at the hospital?” “Hmmm” you know. So anyway the appointment came around and we went to the hospital, saw the surgeon, he examined me and I went for a core biopsy and mammogram, what you ladies have. And he said, you know, “Ok we’ll be in touch with you”. The following week I went back and it was then that one of the consultants said, “We’ve examined your core biopsy and we’ve found that some of the cells are cancerous”. And it wasn’t until then that … ‘I have breast cancer’. And I’ll be quite honest I just bit my lip and looked at my wife and… I didn’t know what to think or say, or, or anything. 

John described his hot flushes and night sweats as a 'pain in the bum' but said they were not a major problem for him. He also wondered if tamoxifen had made him gain weight.

I’m on tamoxifen.

 

Tamoxifen, yeah.

 

For five years. But, well they, they cause me a few problems so I, there again I tend to understand ladies and hot flushes, and night sweats, sometimes I’ll wake up in the night and my wife will say, “you ok?”. I’ll say “God I’m sweating, it’s pouring out of me”, “oh” she says “that’s the night sweats type of thing”, you know. But no, Kate, no, I’ve been fine apart from say the tamoxifen which they tell me I’ve got to take for five years.

 

And you were saying that the tamoxifen you get the night sweats and things, did, did you, did they talk you through some of the possible side effects of the tamoxifen?

 

Yeah they told me, they told me, I forget who it was now, it might have been, it may have been one of the breast care nurses, but, she was dead on, she knew, she’s obviously dealt with women with breast cancer.

 

And then she you know different things and she went on to explain about the tamoxifen. She said, “You may”, seemingly it’s a female hormone or something that’s in tamoxifen, she says “You may experience hot flushes now and again and night sweats”. And she was right. (laugh) … which are a pain in the bum. Then again, like I said earlier on , I’m pretty sure what ladies are going through, you know, all of a sudden for some reason you think ‘phew, God, it’s hot in here. I’ve got to go out for fresh air'. You know it’s, but ..

 

Yeah. And have you had any other side effects from the treatment, or from the tamoxifen?

 

Not that I know of, Kate I’ve, I’ve put a bit of weight on, and I don’t know whether it’s the GP or the nurse, I think they mention that it could be the tablets, you know. It’s probably putting the weight on, plus, you know, as I say, I sleep a lot better since I’ve had cancer, God knows where that’s come from, and I probably eat a bit better, so whether it’s a combination, or whether, it’s easier just to blame the tablets (laugh). For the spreading waistline (laugh). Although I’ve got a theory about that, I read an article once where female hormones in men, too many, you tend to get a spreading waistline, whether you heard it, whether I’m talking a load of rot, but I thought ‘well I must have slightly more female hormones than the average chap’.

 

Yeah.

 

‘So that’s why my waist is spreading’ and (laugh) – so I don’t know. You’re going to say what a load of hooey (laugh)

 

No, not at all.

 

But no, Kate, to answer your question, no, no problem at all, I mean, I complained about the night sweats and the hot flushes but they’re not a major problem, you know I can go for weeks, in actual fact I haven’t had a hot flush for quite a while to be quite honest..

John had mixed feelings about telling people. Sometimes he thought people were embarrassed and felt sorry and uncomfortable. Sometimes he wished he hadn't said anything.

But I have… mixed feelings telling other people actually.

 

Is that because you’ve got cancer or because you’ve got breast cancer?

 

I don’t know, I don’t know love, I wanted people to know, we’ve got some great friends across the road and I phoned them up actually and I said “can you come over I want to see you”, you know. I couldn’t tell them over the phone. And you know, they came over, but other people, I mean, we’ve got marvellous neighbours you know, I wanted them to know, but sometimes I had the feeling people were probably a little bit embarrassed that I’d told them. I got the impression sometimes you know, ‘what you telling me for? What do you want me to do or say?’ Well I don’t mean that in a nasty way. So certain people I did, I found it difficult you know, it was kind of brushed aside you know. So…

 

And again, do you think people were uncomfortable because they were sorry to hear that you had cancer… or…

 

Yeah well with hindsight, with hindsight maybe…

 

Yeah. Or do you think again, for a lot of people it was perhaps the first time they’d heard of men having breast cancer was it and so do you think part of their reaction was to do that?

 

No, I think with hindsight one or two people I can think of in particular, I think you know they did genuinely feel sorry for me – they didn’t know what to say, it’s like when you lose someone you know – someone’s died you know, what do you say “oh I’m sorry” you know. Of course you’re sorry they’ve gone. But, one or two people I did, I thought I wish I hadn’t said anything actually, even though I want everybody to know, men do get it, type of thing. But, as I say, occasionally I wished I hadn’t had said anything. But, you know…

 

And that’s because you were having to deal with their discomfort or just....

 

Yeah whether you know, I think well you know should I have said anything? Or, you know, have I ‘caused them embarrassment, they don’t know what to say, or they don’t know how to react… but getting back to your original question, I remember telling my sister and the first words out of her mouth were, “oh my God I didn’t know a man could get it!”

John always made a point of saying he had male breast cancer, otherwise he thought other people might think they had misheard him.

And earlier on you were saying about your friend who’d felt more comfortable about calling it chest cancer and you had to... men’s breast cancer and use the phrase male breast cancer. Some people have, some of the men that we’ve talked to have not liked the term male breast cancer because they think well, nobody says female breast cancer, so why should you say male breast cancer, but I wondered if you had any views about you know what…?

 

Not really.

 

How it should be referred to?

 

But I always make a point of saying –  when I tell people, I always say - male breast cancer. That’s a good point actually I don’t know why I do, but I always do, whether I think they’re gonna think they’ve misheard me or something you know.

 

Yeah.

 

(whisper)… “He’s got breast cancer?” So I always make a point of saying male breast cancer actually, but don’t ask me why I don’t know.

 

Because we’ve had you know, a little bit, thinking about what best to call the site, as I say – a couple of the men haven’t liked male breast and some of them think, well no, you need to say male breast cancer because otherwise people don’t realise…?

 

I suppose we don’t refer to our, as breasts normally do we, it’s chest, ladies’ boobs, you know breasts, boobs whatever, but men it’s chest isn’t it, so… but no, no, I’d say, I go out of my way to, to mention male breast cancer, whether it helps or not, I don’t know. 

John had a shock when he first saw his scar and still feels a bit different at times because he only has one nipple, but he thinks it must be devastating for a woman to lose a breast.

We touched on the subject once about reconstruction and I think the nurse said, “I’m not sure whether they do much for men John anyway” she said, “I’m sure if you ask they probably could”. But I wouldn’t bother Kate. To me that’s more surgery. And it’s not as though I’m a young fella you know, I’m not running round on a beach six months out of the year, you know. I certainly wouldn’t bother with that you know.

 

So you’ve not got plans to work as an Australian lifeguard or… (laugh)?

 

(laugh) No, no. So no that wouldn’t bother me. No, I was a little bit, the first time I sort of stripped off on holiday, yeah I felt a little bit awkward you could, like everything else, you feel people are looking, you know. I’m sure they wasn’t. But after a while my grand-daughter God bless her, “come on Grand-dad, come in the water… lying there” after a while I looked around and no, I just accept it now. I mean I’ve still got what I call a good tan in that area from the radiotherapy. So it does stand out a little bit, but they assure me that, well it is, it’s going quite quickly now. But apart from that you know, the scar is almost non-existent. Until you actually realise that I’ve only got one nipple you’d, probably have a job, you know, you wouldn’t notice it type of thing.

 

And you know, you don’t feel differently about yourself as a man having you know, had, I mean did that, obviously it must have provoked a few thoughts when it first happened, but, …?

 

Well… I don’t, I don’t think so, I, you know, It’s been said, well I’ve told you – that stripping off on holiday and that. At times I still feel different, from the next chap purely because as far as I know he’s got two nipples and I’ve only got one, which brings me back to what I said to you about the ladies, it must be devastating for, you know, two women to be sitting, she’s got two boobs – you’ve only got one, you know, fortunately you don’t know, but I’m still stripping off. It’s unbelievable, don’t know how they cope with it to tell you the truth.

 

‘Cos you said yourself before, that you know when you’d first seen your scar that that gave you quite a shock?

 

Yeah, I would, as I say, I was a little bit annoyed and ungrateful, I had very mixed feelings, because like I said to you, I thought well, bloody hell, a couple of weeks ago the only thing I’d got was a flat nipple. And now look at me, you know. All round (inaudible) tubes coming out of it and – but, you know that passes and the ungratefulness passes and you know. So…

 

You felt like...?

 

But at times occasionally you do feel a little bit different, but I think it’s, you know, probably psychological or more than actual you know physical side of it. I mean, when you do strip off on holiday, I’m sure people, they don’t have the time, they don’t notice I shouldn’t think, but, to you, you know, you wouldn’t think people, whereas a lady, you would obviously if she was walking round topless, with one boob and not the other one, I mean it would stand out like a sore thumb type of thing. But no, no, apart from, as I say, just occasionally I just feel slightly different, than you know that passes- you put your shirt back on…it passes (Laughs).