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Robert - Interview 27

Age at interview: 58
Age at diagnosis: 54
Brief Outline: Robert was diagnosed with breast cancer in 2006. Had chemotherapy before his mastectomy and again afterwards. He has also had radiotherapy, tamoxifen, Herceptin and exemestane.
Background: Robert is a part-time stocktaker. He is married and has 3 adult children. Ethnic background' White British (English).

More about me...

 Robert first found a lump in autumn 2005 but it didn’t register with him that it could be breast cancer. His lump wasn’t painful but he sometimes got a strange feeling in it like a shaft of light or a ’ping’. He didn’t talk to anyone about the lump but it didn’t go away and got a little bigger. He was worried about what might happen if he knocked it. He mentioned it to his wife who said he should see the doctor, who referred him to the hospital straight away. He was diagnosed with breast cancer in May 2006. 

He had four doses of chemotherapy to shrink the tumour before surgery. He didn’t find this chemotherapy too troublesome. He had a mastectomy and had 17 lymph nodes removed. After the surgery he had some lymphoedema and still gets some swelling. He wears a glove at night to control the swelling and usually puts a sleeve on if he is working in the garden.
He had more chemotherapy after the surgery. This caused some blistering in the mouth and affected his nails. He still has some tingling in his finger ends and one of his toes is partially numb. He also had 15 doses of radiotherapy, a course of Herceptin and took tamoxifen for 18 months. Through this part of his treatment he experienced tiredness. He was referred to a heart specialist to monitor his heart whilst he was taking the Herceptin. He was offered reconstructive surgery but he didn’t want to have any more operations.
Because Robert had had other things happen to him, including a stroke when he was 37 which he has recovered well from, he felt prepared to ‘take the cancer on’. He talked to other people about their experiences and for a while he went to a support and fundraising group organised by women who had breast cancer. He has a close, supportive family and some good friends who he has been able to talk to. His wife has also been diagnosed with cancer and they are able to support each other. He found most people were interested when he told them about his illness and he did not get any negative reactions from people. He feels that the treatment for men with breast cancer is very much on the ‘coat-tails’ of women with breast cancer. He feels confident that his treatment has been successful. 
 
 

When Robert noticed a lump, he never thought it could be cancer. He didn’t talk to anyone about...

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I first became aware of a lump in my left breast probably in the Autumn of 2005, it never registered with me that it would be anything like breast cancer. However, I carried on doing, doing work, stock, I do stock taking for my work. I continued through the Autumn period into the New Year of 2006. It… the lump didn’t go away but it seemed to get slightly bigger and I became concerned, I thought well, if I go and knock this on a shelf or going up a ladder or anything like that what would be the consequences? It certainly didn’t register that it would be breast cancer, I was more concerned about if I banged it, what would happen then. So, I went to the, to go and see my GP, and when I went to see my GP eh, straight away had me off to be referred.

 
So, when you said that you noticed the lump, did you talk to people about that initially or…?
 
I wouldn’t talk to anybody I didn’t even mention it to my wife.
 
Did you not?
 
The minute I mentioned it to my wife in the, sort of March of 2006, straight away she had me to the GP. So she’d would be aware, probably because she was a woman, I just thought it was a, something that was, I was just bothered about knocking it. It weren’t, it weren’t anything else. That was the main concern with me, I thought ‘well if I bang this on a shelf it could swell up’ you know, but I didn’t bother, it never occurred to me at all that it could be breast cancer. I mean there was no discharge or anything like that which I subsequently learned that’s what happens with men’s breast cancer, but I hadn’t anything like that.
 
So just thinking back to when you were first diagnosed, when you said that you first noticed your lump, it didn’t occur to you at all that it could be…?
 
As a man no, and I didn’t mentioned it to my wife or anybody, I just thought, ‘oh well, that’s there, it maybe go away’. And then gradually it must have increased in size, I think that probably…
 
So was it niggling away at the back of your mind?
 
Yes, yes it was yes, certainly by the February of 2006 yep, you know after three or four months thinking well, and then by the March I was thinking ‘well if I knock this…you know it could be awkward’.
 
So it was kind of almost a fear of it being painful or something?
 
That’s right.
 
So, and was it, did you get any pain from it to… at that time?
 
Eh, no, the only thing I would say that there was like a very brief, like a, shaft of light or something, just, you just be aware of something there, really quick like ‘ping!’
 
Almost like being stabbed with a needle or something like that?
 
Well - It wasn’t as painful as that but you were just aware of, of a feeling of a sense, and it would last for less than a second you know. It’s hardly, you just knew, and you’d be thinking well is that the nerve ends or something.
 
And so what prompted you to finally tell your wife then, if you’ve been sort of, just thinking if it’d been in the back of your mind for those few months?
 
Yes that’s right. And I just said, “Well I’ve got this lump, I think I better go and see the GP about this”. And straight away the wife she would be thinking well, breast cancer … her mindset would be different to mine.
 

Robert had been offered reconstruction but didn’t want another operation. He was careful about...

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I was offered reconstructive surgery if I’d particularly wanted it, but I didn’t, I didn’t want another operation.

 
No, and so were you offered that at the, at the time of your mastectomy?
 
Yes I was.
 
Yeah, yeah, so you could have had it at the same time, or you could have come back for it?
 
It would probably have been later.
 
Yeah.
 
‘Cos I didn’t want another, another operation, I thought one was enough.
 
Yeah.
 
Didn’t matter for me, as a man, I felt it didn’t matter to me, but obviously for women it’s a different thing.
 
And so you know just talking about your body, you say, you know, you feel like it doesn’t matter for you, I mean are you comfortable about this time of year you wouldn’t be taking your shirt off much anyway! (laugh)
 
Well it wouldn’t bother me if we went, if we we’re abroad, the only thing is, I’d have to be very careful about going in the sun anyway now, because it, because I’m fair skinned anyway, I think after the radiotherapy treatment and everything else – so I wouldn’t want to get it burnt, I wouldn’t want to get the area burnt.
 
Yeah, but you haven’t felt like you’ve had to change
 
No.
 
aspects of your life because of feeling
 
No
 
differently about your, about your body at all?
 
No. No. It wouldn’t stop me going swimming if we were abroad at all. 
 

Robert had blistering in the mouth after each treatment. His nails thickened and dropped off and...

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I started chemotherapy on June 8th 2006, four doses of chemotherapy, to try and reduce the size of the tumour. That particular chemotherapy did not affect me in any shape or form. I could carry it on, and I was fine. I had my operation in September of 2006, and then I think it would be probably be October I started with the second round of chemotherapy. Now that chemotherapy was a much stronger dosage, different to the first lot and that caused blistering at the mouth and in the end all you could, all I wanted to eat was something that was very sweet because the taste buds went completely you couldn’t, everything tasted funny, odd, and not very nice really. Radiotherapy started in the, towards the end of November as well as at the same time as I was having chemotherapy and I had my last chemotherapy on December the 28th.

 
Just between Christmas and New Year.
 
Yes, but, sort of – well an amusing point is that’s where, my youngest daughter got married on the 1st December and her in-laws, her father-in-law took me to get my radiotherapy treatment that particular morning. And I’d just recovered, I’d recovered from the previous dose of chemotherapy enough so that I could give the speech, the father’s speech at the wedding in the evening, so that was a good thing.
 
That’s, so that’s an awful lot of things to be dealing with at the same time.
 
And four days prior to the, I think it was four days, prior to the wedding, our first grandchild had been born as well. So there was plenty to keep on going – to take your mind of this chemotherapy.
 
The symptoms from that second lot of chemo, was, you’ll get cold or flu or…
 
Right.
 
And then that was after about three days ‘cos we always went in on a Thursday or something like that, to have my treatment and then after that I got this cold, you know I went to bed, then two days after that the blistering started, so then you go into a pattern.
 
So did you have that after each of your – did the blistering come after each dose you had…?
 
Yes, yes, and you have to have, I’m thinking now, you have to have steroids – You have to take steroids before you went for the…
 
Yeah. Was that prednisolone or – anyway.
 
I’ve got my book, I’ve got my book here you can look at that. You had to have steroids prior to going for your treatment and then you took them just for two or three days I think it was. Whether that was to prepare you, so you could stand it.
 
Yeah. Yeah. And so how many doses in your second lot of chem…?
 
Four.
 
You had four, four doses there. And did you have other side effects, did you, did it affect your hair or…?
 
Oh well it did with the first lot, all my hair came out. And so my daughter, my youngest daughter went off and bought a pair of clippers and ever since then, if anything, any hair grows, have it all off! … as I am!
 
So did you have quite long hair before that…?
 
No, not really it was thinning a bit so.
 
And did you lose your eyebrows and …
 
I think so, I think everything went, yes.
 
So had, how did that feel at the time?
 
… sort of odd I suppose but I wasn’t again, it didn’t, didn’t bother me. But again, it’s probably different for women, I mean a lot of men look like this now.

And did you have other side effects from the, from the chemotherapy at the time?

Yes. The nails go funny, finger nails.

When you say they go funny?

Yeah, they just go a bad colour. Thicken up… drop off – still a little bit of tingling in my finger ends, but the worst one is my right toes – they can, well they’re partially numb. And those toe nails are em, gross really.
 
 

Robert found it difficult to know whether the tiredness he was feeling was due to the...

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Yeah, well probably looking back I’d started on tamoxifen tablets in the December of 2006 or – or maybe the January I can’t remember, and I was thinking the tiredness was probably associated with that, but it could have been equally the Herceptin that was causing it, to feel tired as well. And so once that stopped, yes, you still… tiredness was a problem with the, problem with the tamoxifen maybe it was just getting over the operations maybe it was the chemotherapy, I don’t know – but, in that initial year or so, you could get very tired in an afternoon and people, other people, women I’d talk to that’d had breast cancer they would say the same, they would get tired. They changed my drug of tamoxifen onto the new type of drug, in 2008, August 2008 and that’s been, that’s been I’m more or less back to normal in terms of how I feel on a day to day basis, I’m not saying I don’t get the odd day when I feel tired, but it’s pretty rare occurrences is that now.

 
And so what’s the drug that you’ve changed on to now?
 
It’s – I’ve got it in the kitchen.
 
Yeah, ok we’ll have a look at that, it’s on the tip of my tongue, I think the one that I think it probably is, but…
 
And I mean I read about these new type of drugs in The Times newspaper, there’s an article about them, and I thought well I’ll go on that, because it specifically said the effect of these was to reduce the tiredness in people and so I was keen to have a go. However, because of the track record of tamoxifen they wanted me to be on them for 18 months before I came off them and went on to the new ones.
 
Right.
 
And that’s what I was.
 
Yeah, so you did the full 18 months on tamoxifen.
 
Yes I did yes. 
 

Robert spent some time trying to weigh up whether he would gain sufficient benefit from Herceptin.

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When I went on the Herceptin treatment, I mean, there’s plenty of newspaper articles about people who are desperate to go onto Herceptin, and I was just of the opinion I thought well, there’s a small margin between the treatment that I’d had and the improvement that you get with Herceptin. There wasn’t that much, you gained, how much it was going to affect – yes, but Herceptin had only just been released for general use, but, prior to that it had all been used, people who had been said to have had secondaries and that sort of thing, or, so they were using it, and I was the one … I – for these, for where we are, the area that we’re in, I’d be one of the first people to go on it. But they knew my, my heart was just, one side is just slightly behind the other one, one side. And they knew that it could affect it – it did do. I mean when I went for my operation they said, when I went upstairs they said, “Oh” he said, so this is before the Herceptin he said “oh” he said “have you had a heart attack?” well I said, “If I have, I’ve missed it!” (laugh) – There’s a… he said, “There’s a slight difference on your, on the counter that they do”, the,… you know the chart and it was just – so they knew you see, there was something that, … and then the Herceptin just eh, heart couldn’t have stood that.

 
And it sounds like you’re very well informed about, you know you were saying about the kind of marginal gains that you would get from the Herceptin so did you– ?
 
Yes, well I just felt at the time, the reason why I was, I was, I felt, well, if I could get my general health back, do I need the Herceptin, is it - ? You know, this was after all the chemotherapy everything was finished, it was in the February and I’m thinking ‘well do I need it?’ I mean you still go through something like 95% to 97% success rate, you know – there weren’t much in it. So that was why I thought, well is it better just to get my general health back or do I need this extra Herceptin treatment? Anyway – when I went in the February they said “right, you’re on it straight away”.
 

Robert had four sessions of Herceptin before he developed some heart problems and had to...

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But I finished chemotherapy on the 28th December 2006 and they would start me on a year’s course of Herceptin in, I’m going to say it was February of 2007, I had four of the courses, the problem being that I had a slight defect on my heart which one side slightly behind the other, and, they had to stop me having it because it had reduced the blood flow to my heart by 30%.

 
Right.
 
They did, they were aware of it when they started the Herceptin treatment that I was going to have to be monitored. So after four treatments of Herceptin that was the end of it, they wouldn’t risk any more. The risk was too great.
 
Only the side effects of the Herceptin treatment had to go under, the heart lady...
 
The cardiologist?
 
Yes – and she, she was very good.
 
Yeah.
 
And she put me through several tests and aspects of treatment over the course of, well I was going to say over two years but I’m not quite sure on that. And I had to go, keep going having tests – they put stuff in your veins and… it feels cold.
 
So you’ve been back and forth to the hospitals...?
 
Oh, yes, various things yes, yeah, and she was dead chuffed when, when she signed me off, which would be November last year I think it was, she’d done her stuff, she said “everything’s fine now your heart’s back to normal”.
 
Good. So, so you feel that you’ve had good treatment?
 
Oh yes, yeah yep. They knew there could be a problem with the Herceptin, there was, and the, you know they dealt with it.
 

Robert had 17 lymph nodes removed and developed lymphoedema after his surgery. He wears a glove...

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The surgeon that carried out the operation who’s now, I think he’ll maybe be in charge, and I asked him after the operation what it was like, and he just said, I said “Have you done a good job” he said “fantastic”.

 
That’s good to hear isn’t it?
 
Yeah.
 
Yeah.
 
Well I’d a bit to go at, you know there was a bit to, do you know you know they could, they cut round and everything make a good job. I also had a touch of lymphoedema after it as well.
 
Right, right.
 
It had got into one of the lymph nodes, that was on diagnosis and when I went for the operation in September it was still in one, it hadn’t gone any further, so they took 17 of those out.
 
Right.
 
And, I just get a bit, just a little bit in my hand occasionally.
 
So do you, you still get a bit of swelling and…?
 
Yeah but I wear gloved sleeves that control it.
 
So and so how often do you have to wear your sleeve then …?
 
I wear my glove.
 
And your glove.
 
…every night. 

 

 

Robert had looked for information about alternatives to taking tamoxifen and he asked his doctor...

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So just going back to the information that you got you said that you’d mugged up on everything and you’ve been able to give people information about what was happening to you, so was some of that given to you when you went to the hospital then, or did you go searching around yourself for it...?

 
More or less all in the hospital, other than, than I did pick up on these, eh, on this new range of drug in a, in a newspaper article in the Times to replace, or that can replace tamoxifen.
 
Is that Arimidex is it? That’s…
 
No.
 
No, ok.
 
No I think it’s a new, a new range, have a look at my books.
 
Yeah. And so when you went did you go back to the consultant then and suggest that yourself?
 
I did, I did yes, yes, as soon as I read the article I mentioned it, and they said “well we would just like you to be on, stay on the tamoxifen for 18 months”. And I did do.
 
And how far away from the 18 months were you at that stage did you…?
 
I would say it’d be the June, possibly, I think I kept the newspaper article anyway.
 
But they were, very willing to discuss the change...?
 
Yes they knew, – it wasn’t that particular drug that they put me on, that was mentioned in The Times, but they just said there’s a range of drugs, and I picked one out of the newer range for me. 
 

Robert described treatment for breast cancer in men as being on the ‘coat tails of the treatment...

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

 
I would, I would make the point that the treatment for male breast cancer is very much on the coat tails of the treatment for female breast cancer. And I’m not saying that the, that the consultants are in the dark, about male breast cancer, because obviously they learn as they, as they go on, but, there has not been the in-depth research into male breast cancer, because there aren’t enough people. So, it’s a bit, I’m going to say it’s hit and miss, that’s probably being a bit unfair, but it’s, it’s a calculated risk as to what they do.
 
And presumably you were never asked about taking part in any trials or anything, anything like that along the way?
 
No they would often have, student trainees there, with the consultant, and I was always happy to let them come in when I was being examined and everything else and (cough) their eyes would perk up when the man came in, some, somebody a bit different.
 
Yes, so as, you know, it’s fantastic that you’re able to give people experience themselves to sensitise them to possibly coming across it in the future.
 

Robert felt he had ‘tiptop’ treatment with everyone fussing over him. He was the only man at his...

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So when you went into hospital to have the operation did you go into a general surgery ward or… ?

Well actual fact I ended up in a room on my own. So, so yeah. Tip top treatment that I had, can’t complain at all.
 
That’s very good to hear. And when you were at the breast cancer clinic can you describe… the breast clinic, can you describe a bit more about what that was like just before we started the interview your wife mentioned that everybody assumed...?
 
Oh well yes, because I was a man, yes, I was the star of the show me - all the nurses running around, and good rapport with people and everybody fussing me which I thoroughly enjoyed.
 
So you felt that you stood out from the crowd but in a...
 
Absolutely yes.
 
as a celebrity rather than in an uncomfortable way for you?
 
It wasn’t uncomfortable at all. There were tonnes of people, well I’m outgoing anyway so. I like talking to people. That wasn’t an issue.
 
And in the way you were treated had they, had other men who’d been diagnosed with breast cancer?
 
The senior consultant he said to me, well he said, “You’re the only man”, this was in the May, he said, “You’re the only man up to now”. He said, “I may get another one in the year”. That was in 2006. So you can tell how rare, and he says, “I mean because there’s only 300 men in the whole country”, which I subsequently learnt, and the chances of getting anyone else are pretty remote. 
 

Robert went to a breast cancer club for a while. There were some men there to support their...

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I talked to a lot of interesting people, a lot of interesting, and the experiences that they’d had. I probably was the fittest of anybody who’s ever in the place you know the women were, well there was suff…, you could tell they were suffering a bit. And one woman who organised a Pink Breast Cancer Club, I’m not sure what happened to her in the end... I’m not sure whether she’s still with us or not.

 
So is that a sort of support group or a fund raising group?
 
It was a fund raising group.
 
Did you ever think about looking for a support group of any, of any description?
 
Well I did join a support group for a period, sort of just, I’ve sort of let it drift a bit.
 
So was that like really, was that for people with breast cancer specifically?
 
Yes, yeah. They’d organised fund raising do in the, in the local hotels, and, that was, that was their main day, and then they’d have a… days out, but we never went on any of those. And we would go to the fund raising do and that was about it. And I would have ‘cos I was entitled to a, I had a pedicure… I used to have…
 
Did you (laugh)
 
Yes.
 
Did you enjoy that?
 
Yes.
 
And so when you went to that support group were you the only man there?
 
Eh, well ‘cos the women had their partners –
 
Ok.
 
…and that was it so, – but yes I was the only man… yes.
 
I don’t suppose if it was a lot of couples going along it then, people would, you wouldn’t necessarily know who was, who had breast cancer and who was a partner of somebody with breast cancer?
 
Correct. Yes.
 
So, but you say you don’t keep in, particularly keep in touch with that group anymore now.
 
No, no.
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