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Derek - Interview 16

Age at interview: 65
Age at diagnosis: 57
Brief Outline: Derek was eventually diagnosed with breast cancer in 2005 after his GP had been slow to refer him for a mammogram. He had a mastectomy, and chemotherapy, radiotherapy and tamoxifen.
Background: Derek is a retired driver for the blood transfusion service. He is married and has 2 adult children. Ethnic background' White British (English).

More about me...

 Derek’s wife had first noticed a change to his nipple and they asked a doctor at the hospital about it when they were there for an unrelated issue. He advised him to see his GP. However his own GP dismissed his concerns and he had to persist to get a referral to see a specialist. When he received his diagnosis he felt totally unprepared and shocked at the news. 

 
He was very seriously ill whilst having chemotherapy when he delayed seeking help when his temperature began rising due to an infection. He was soon hospitalised and required intravenous antibiotics to recover. He felt as that he had had a near death experience. He managed to get through the rest of his treatment (including tamoxifen) without any further side effects. 
 
After surgery he required physiotherapy for the lymphodema in his arm and to get the flexibility back to ensure he could lie in position for his radiotherapy. He still has to do the exercises to control the lymphodema. He felt uncomfortable during his time on the breast cancer ward in hospital despite being in a side room. He saw the women were given handbags to carry their drains around and he felt upset that he had to put his in a carrier bag. His wife brought him in a bumbag which worked really well and he suggested to the ward that they should get some for men. He is still regularly asked at the pharmacy whether his prescription is for him when he collects his tamoxifen prescription. 
 
He finds it difficult to listen to information about breast cancer and does not want to know too much. His wife knows a lot more and tells him what he needs to know. His wife has been a huge support to him and had been with him throughout his treatment. He struggled to come to terms with his diagnosis and at times has been frustrated and angry with people. He has felt unable to control his temper sometimes and is upset and embarrassed about the way he has spoken sometimes. He has had some counseling but he did not find it helpful. He felt that the support and love he received from his family was all that he needed. 
 
Although it is eight years since his diagnosis, he still feels breast cancer is never far from his mind and he finds himself checking his body for lumps whilst watching television. He has been open about his diagnosis and has since talked and supported neighbours – both men and women – who were diagnosed with breast cancer. He sees this as ‘payback’ for the support he has received. He wants to help raise awareness that men can get breast cancer and gets frustrated when men are never mentioned in the media or in breast cancer fundraising activities. 
 
 

When Derek told his GP something ‘wasn’t right’ with his right breast, the GP dismissed it. Derek...

When Derek told his GP something ‘wasn’t right’ with his right breast, the GP dismissed it. Derek...

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 Say it was about 2001 approximately, about eight years ago I was… first diagnosed. I didn’t personally notice. I had sort of a… something I felt wasn’t right on me right bust and me wife then says, you know, I should go to see somebody. Before that I had, I was on warfarin then, a blood clot, and I think that’s where it really came from. When I was discharged the doctor there says, yeah, cos he had it in me notes that I’ve got an irritation on me bust and he had a look at it and he suggested that I should go to seek, seek medication, you know, which I did do, and I went with me wife to see about this. The doctor says it was nothing to be concerned about. They wouldn’t believe me at all. This was going on for quite some time. In the end me wife did come with me and she really had it out with him and it basically boiled down to, “What if it had been me as a woman coming to see you, what would you had have sent me for?” What do you call it, the word, I can’t remember the word…

 
Biopsy? Mammogram?
 
No, no, where they put, they press it together.
 
Yeah, the mammogram.
 
The mammogram. He said, “I’d have sent you for one of those [mammogram]". And she said "why can’t you send him?” He says, “Well, just wasting people’s time”. That’s what he basically said, but it did come that he did send me, he sent me for an x-ray first and nothing showed up on that, which I found out they don’t show on an x-ray anyway. And then we did eventually get sent down to [name of hospital] where I did have that and it was found then that I did have breast cancer and it was right behind the nipple, on the right hand side, and they did take a biopsy which obviously they went in with a little camera at the side of me. My wife was with me all the time from that moment onwards and… the biopsy showed that there was a cancer there and then from then on they took me into a room and told me that that verbally, you know, I did have breast cancer and they needed to treat it ASAP which they did, really.
 
You said that you had problems with the warfarin and then that doctor said you need to see your GP about this change in your breast?
 
Yeah.
 
Did you alert him to that change in your breast?
 
I didn’t… it wasn’t something that… how can I put it? There was a change. The wife said me nipple was…
 
Inverted?
 
Which I couldn’t really see. My wife was 101%, you know, in what she did with me, yeah. I can’t… yeah. It was from then that we sort of, with her saying, “You must go and see somebody,” and so I went down to the doctors where I went [inaudible] what that was.
 
So from you first noticing this change or your wife noticing, how long was it until you actually got seen?
 
To go to… maybe three weeks, maybe something like that.
 
OK.
 
It wasn’t that long, wasn’t that long. Once we got to know, I got to, they sent me down for the mammogram, from there it was like wow.
 
OK. So you just persevered with your GP?
 
Yeah.
 
You just kept going back to him?
 
Yes, oh yes, yes. I was going, I’m one of these that I don’t listen to what they say, you know, and my wife just says I’ll come with you and then… which I was glad she came. She was there the whole time. Everywhere I went, she came with me because she could ask, she wanted to know what the T’s were and dot the I’s when I was man to man doctor he was saying “oh yeah, we’ll talk about other things other than what you’ve gone for”, you know, basically.
 

Derek still experiences some stiffness under his arm, even some years after his surgery.

Derek still experiences some stiffness under his arm, even some years after his surgery.

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And how was your wound?

 

It was fine, yeah. I just didn’t realise how big or large it were or… were quite long. I didn’t realise that. I’ve not much recollection of that, of the operation or anything. I’ve not much… can’t really remember much about it. Obviously stiffness, I still get stiffness now after all this time because apparently when I go to the doctor’s to ask her about this, it was, it says it’s because of the depth of how far they’ve gone down through and my lymph glands here, I was very fortunate as well I didn’t get any bloating or nothing like that.

 

Derek had taken tamoxifen for five years and had no side effects. Then took another drug for a...

Derek had taken tamoxifen for five years and had no side effects. Then took another drug for a...

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And then when did you start your Letrozole?
 
The first one, oh, I can’t think of the name of it. It’s a very common one
 
Tamoxifen?
 
You’ve got it. I did that one, five years.
 
So you did that one for five years?
 
Five years, and then I went to see [name of surgeon] here and he said, “I think I’m going to try you on a new one now”, he said “because it’s not proven or something like that, but… tamoxifen spans up to five years”. After that it doesn’t have the same effect, so he’s given me this one called, it’s lexitol [Letrozole] I think they call it, so I’ve been on that ever since, and he did say it would take up to ten years for the treatment to go.
 
And how did you find the tamoxifen?
 
I had no effects. I’ve been very fortunate. I’ve had no effects from either tablet that I’ve had. Never, can’t say I have. It’s been good to me. I think I’ve been one of those people that have been OK you know. No, no qualms with it. Not that I can…not even sickie even when I had the radio and the chemo I weren’t a sickie person but I’m not in general, I never have been, you know, to that point. Very fortunate. Yeah.
 
 

Even after many years, Derek was still asked what his tamoxifen tablets were for at the chemist....

Even after many years, Derek was still asked what his tamoxifen tablets were for at the chemist....

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 Can I take you back to the, your diagnosis? What sort of information were you given at the time?

 
Very little. Very little, from the doctor’s point of view because I would say at that particular time that I changed doctors since, they were fairly young and I was told that, you know, some of the younger doctors are quite up to date if that’s the right word, you know, as to what cancer in men, it wasn’t heard of as such it was going on, they know it was but not to the same thing I was in [name of city] itself, even today when I get those tablets they ask me over the counter “who are they for?” Yeah, just after it, I’ve been getting them for how many years and they still ask me, “Who are they for?” They look at you, and even today I talk to members of the public or members of my friends and “men, men don’t get that”. I says, “I’m proof that they do”, and I can show them, you know, that I can show you it, and I just lift it up and show them, not me body cos I did is so often but we don’t put people off but if they say you know “oh look”, you know, some say yes, some say no, whatever, but the doctors at that time I would say particular ones because they were youngish doctors they weren’t up to date with a lot of… maybe they’d read it and everything but… as I say, it wasn’t till…
 
You didn’t get any leaflets or any information specific to you?
 
No, not.
 
Did you get anything?
 
Pfff… it was very limited what I did get. If I did it was from the hospital or from the cancer nurse who was excellent as well. She was very good. 
 

Derek’s manager and workmates were very supportive when he went back to work. His colleagues...

Derek’s manager and workmates were very supportive when he went back to work. His colleagues...

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You were obviously working at the time you had your diagnosis.

 
I was.
 
So was there financial implications of you and your diagnosis?
 
I got paid through my work. I fortunately got full pay for x amount of months. I weren’t off that long.
 
Were you not?
 
No. I weren’t off that long. They put me on… obviously I’m a driver, I’ve been driving most of me life. So it was mainly light stuff but in my job there was no light stuff. You either picked a bag of goods up or you didn’t, simple as that. You know, some jobs are like that, aren’t they? There’s no easy way out or… but the men and people were excellent. If they saw me doing out… I’ll do that for you. Very supportive, the management, my old transport manager, need anything at all just come and see me and I did and he was excellent with me. They were very good, yeah.
 
 

Derek goes every month to his group which is mainly geared towards fundraising, although they did...

Derek goes every month to his group which is mainly geared towards fundraising, although they did...

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All my friends and relations, they all… support. And I say, you know, we joined a cancer sort of [name of group] they call it and we go there once every month and it’s all ladies as you probably know that’s had breast cancer. There’s maybe two men that go there and we just join in and do what we can. I call it payback.
 
Is it a support group?
 
Yes.
 
It is?
 
They have their own… most of the ladies were in the infirmary. They have paid and bought for that room, all the facilities in that room, and also how they’ve paid for the doctor to go in to find out things, pay him on a basis. No, it’s very good, it’s very successful, yeah.
 
And who told you about that group?
 
Do you know, I don’t know how I got into that. Maybe one of the ladies down at the hospital down at [name of hospital] that probably told me, and it’s just… it’s once every month and we just all go and meet and express everything, what’s happened and try and… events going to raise money all the time, which we do do, catwalks, fashion shows which I’ve done two, third one next year which I enjoy, you know? And buy tickets and it all raises funds for what we think’s a more worthy cause.
 
Do you talk quite freely within that group about these sort of things?
 
Not particularly. It’s not that type of a thing. Unless it comes up that somebody in the group has had something like a husband or they know people that’s had something like that, it’s mainly for fund-raising, the group that we’re in. Mainly for fund-raising which they do, you know, they have garden parties, they have jewellery shows, fashion shows, they have people coming to the houses.

 

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