Eddie - Interview 21

Age at interview: 70

Age at diagnosis: 69

Brief Outline: Eddie was diagnosed with breast cancer in 2009, although he first noticed a lump in his early teens. Had a mastectomy, but did not need radiotherapy or chemotherapy. He is taking taxomifen.

Background: Eddie is a retired policeman. He is married and has 3 adult children. Ethnic background' White British (Welsh).

More about me...

Eddie first noticed a lump on his left breast when he was 12 or 13 years old which he thought was a bit unusual but he didn’t talk to anyone about it at the time. During the 1980s, when he was in his 40s Eddie thought the lump was a bit bigger and he mentioned it to his GP when he was visiting him about something else. His GP sent him for a biopsy which came back clear. 

In 2008 he mentioned the lump again to his GP but it was decided that he should not go for another biopsy at this time. In April 2009, Eddie started getting a stinging sensation around the lump so he went back again to his GP. He insisted on a biopsy this time and his GP agreed. The biopsy and mammogram confirmed that he had breast cancer which was a great shock because he didn’t know at that time that men could get breast cancer. He was admitted to hospital soon after and had a mastectomy; 16 lymph nodes were also removed.

When he first returned home from hospital Eddie felt quite vulnerable and isolated, despite having good family support. This feeling passed. After he left hospital he had an infection in his arm and he has had lymphoedema. Eddie was given the choice about whether he should have chemotherapy or not, and he chose not to have it because he felt the gains for him were very small. He has been on tamoxifen since his operation.

Because of the lymphoedema, Eddie is very careful to protect himself from cuts or bites to reduce the risk of infection. Since taking tamoxifen he has sometimes felt more impatient and more intolerant.  

 

Eddie noticed a lump when he was 12 but didn't mention it to anyone. A biopsy in his 40s proved normal. Twenty years later the lump began to sting and he insisted on another biopsy.

 

That in actual fact, surprisingly enough I did have what I consider to be a lump, in my left breast, which I noticed at the age of about twelve or thirteen. At this particular stage it didn’t mean very much of course but although I distinctly even now, at the age of seventy, I actually remember that it seemed to be rather unusual. But of course, that particular notion was sort of kicked into touch straight away. There wasn’t anything- I mean I was twelve or thirteen, I had no knowledge of things like cancer and that sort of thing.

 

Did you speak to anybody about that at the time?

 

No I didn’t, I didn’t in actual fact.

 

Not to your parents or-

 

No I didn’t in actual fact, that is a bit of a surprise but I don’t- I’m not aware that I did. And I may have, but I’m not aware at this particular junction that I did. Then we basically, we fast-track to the 1980s, I can’t give you an exact date, but in the 1980s, I needed to go and see the doc- my GP as something quite minor, and thought that I would bring the matter up because the lump appeared to be a lot larger than it had been when I was a young teenager. Not to any great extent but to- a little bit. It seemed to be a little bit larger.

 

So you would’ve been in your late forties or so at that kind of time?

 

I was in my mid-forties at the time. So, I went along to the GP and whilst I was there I sort of asked him if he- I consulted him in relation to the lump and he said, I think it might be a good idea to send you for a biopsy. I went for a biopsy, probably I think about two or three weeks later, but in consequence it all came back clear. I remember when I had the biopsy the doctor, who just happened to be my own doctor on a private visit to the hospital I was at. So I actually- he said, “Now Eddie for goodness sakes don’t start screaming. Women go through this without having- without showing any sign of pain at all, now I don’t expect you to”. It was just one of those things. Anyway, it turns out that it was clear. But there again why shouldn’t it have been, because I wasn’t aware of any breast cancer being involved with men at all.

 

And so they didn’t mention that as a possibility at the time.

 

They didn’t in actual fact, no, no. So that was in the 1980s, or the mid 1980s and then, again we fast track right the way up to 2008, when we had by that time, it had been a year living in [area] we were then living in London [area] And as a consequence, again visiting my GP, I thought I would have another word and see what he thought.

 

So the lump had remained there throughout?

 

Yes, the lump stayed there and what have you. And fortunately it was decided - I’ve got to say that it was both our decisions that it wasn’t necessary to go along- which perhaps now looking back, I don’t blame him or anything like that, but perhaps we- he- perhaps he should’ve insisted, that I did go for a biopsy. So that was the end of 2008 and again we fast track to April 2009, when- I must admit, I didn’t do anything about it for a couple or two or three weeks, I started getting a stinging sensation around the lump. And so I went back in on this particular occasion we both agreed and to make the point, in actual fact we insisted really on having a biopsy.

 

When you say, that we insisted, was that you and- ?

 

Myself and the GP. I virtually- we were- he was a little bit iffy about it and I thought to myself, well no this time we go for it.

Eddie was in a 'haze', dejected and 'in denial' when he was told he had breast cancer. He didn't know men could get it. A 'stiff upper lip' helped him to cope with his initial emotions.

 But there again of course I had to wait then until the fourteenth of May I think it was for a- for the results to come through. And so I returned to the hospital, saw the same consultant surgeon, and unfortunately it was one of those very strange things. I- you could suggest that she was extremely brutal with me-

 

Right.

 

-inasmuch that there again- how do you tell somebody he’s got- he, she or he’s got cancer, especially a man...

 

Yeah.

 

... who doesn’t believe that he’s- that this really existed in relation to men. Well not any great knowledge anyway. Quite unfortunately, as the case happens. But, she just basically turned to me and said, “This is very surprising Eddie, you’ve got breast cancer”. Well (laughs) this is- I don’t- I can vaguely remember being in a haze, inasmuch that this was- a. wasn’t happening to me, I was totally dejected, I was totally in denial. And I remember saying to her, “You’ve got to be joking haven’t you? You are joking?” And she said- and then I, before she said anything I said, “You’re not are you?” That’s the first reaction is that something is wrong. In consequence, thankfully the, who was to become my breast care nurse, was also in attendance, quite for obvious reasons. I didn’t appreciate why she was there, and of course now I- soon as I was told she was there to support. And she put her arm around me and what have you. Then there was a- I suppose virtually a split second of… tearfulness. I think one tear came out. At that point I shrugged. It was something that stepped in was my father’s genes, I was brought up to be a stiff upper lip.

 

Right and so that …

 

(Overtalking) That sounds rather conceited I know, but it’s- that’s the way I was brought up. This- although this was happening to me it wasn’t.

 

Right.

 

I was completely in denial. There was no doubt about that. Having said that, I thought to myself well, basically where do we go from here? I remember at my mother’s funeral if it makes any sense at all, that my father who was standing next to me as the coffin went through the curtain, in the crematorium, he dropped- I held him up, you know, he only dropped a few- six inches or so, he was dropping to the floor. I held him up and he shrugged me off and that was exactly the same attitude. These were his genes that were now operating in me. This was something that was, you know that was, I was expected to sort of stand straight and take it. Then came the form of acceptance, a feeling of acceptance, which is a little bit unusual.

 

How long would you say it was between you feeling that sense of denial and then beginning to feel that sense of acceptance?

 

Probably the same day in actual fact.

Eddie was diagnosed with lymphoedema during a routine visit to his oncologist. He was prescribed antibiotics and referred to the local lymphoedema clinic.

 And, she- and I thought this was going to be a straightforward, just have a quick chat and what have you, and she looked at my arm, which was quite swollen, my left arm. And she could see something that I couldn’t- I wouldn’t have known, and she feels- she felt, I should say, that somehow I’d managed- the arm was infected.

 

Oh dear.

 

Yeah.

 

Yeah.

 

So in consequence, not only did she put me on a course of antibiotics, and that was for seven days, but she also made an appointment for me, cause she wasn’t happy with the arm, to go to the [name of] Hospice in actual fact, that’s where they were, they had offices there, which is the lymphoedema clinic.

 

Right.

 

That was made for me for a week later. In the meantime I took the antibiotics for a week, for a week, and went back, then they’d looked like everything had cleared up after a week, obviously using the antibiotics. So then I was only with- oh this was another breast care nurse who was sitting in for mine. And she said it looks- everything seems to be okay. So I went then directly to the [name of] Hospice, to their- the lymphoedema offices, where I saw a practitioner there. And she- she immediately put me on two weeks of antibiotics. (Laughing.) So, you know about sixteen a day or something like that, or something really ridiculous and measured the arm, as they do. Made another appointment for me to come back.

Although Eddie's first appointment with the lymphoedema nurse lasted an hour and a half, he still felt he needed more information afterwards.

But then I’ve moved on you see to lymph care nurses now, and lymphoedema nurses, and what have you. So.

 

And again, have they been quite supportive to you? I know you’ve been through several of them, due to various life events that they’ve had –

 

(laughing) … yeah, they have been, I never- I didn’t feel I had the same support as I had from my breast care nurse, I mean it was a different ball game altogether. I felt, what I was going along was for a chat, and my arms had been measured and that basically was it, you know. We did have a chat. I mean the first time I went to see- the first appointment was an hour and a half.

 

For the lymphoedema nurse?

 

For the lymphoedema practitioner yeah.

 

So you know there was, you know there was plenty to talk about. But at the end of the day I walked out thinking, ‘Well where have we gone from here?’ You know. I mean lymphoedema, so I managed to get hold of some articles on lymphoedema, which helped.

Eddie took antibiotics on holiday in case he was bitten by mosquitoes on his affected arm. His compression sleeve was uncomfortable in the heat.

And we…I was- at this point I was more concerned in actual fact whether they were going to allow me to go on holiday. We’d booked our holiday for the 3^rd of September, to Greece, which of course is a minefield in relation to mosquitoes and all that sort of thing. And of course all I needed was a bite on the at risk arm and I was going to be in trouble. So, just before I went- we went on holiday, they fitted me up with a compression sleeve.

 

Right.

 

Okay?

 

Yeah.

 

And that had to be worn all day, but could be taken off in the evening, you know socialising and things like that and what have you. Cause you got very sort of self-conscious about it. Also I was extremely self-conscious about my scar on my chest, where they’d taken my left breast off.

 

Yeah.

 

And, wouldn’t go into the pool and all sorts of things.

 

Yeah.

 

But of course the most uncomfortable thing is this sleeve, of course, because it was so hot out there.

 

I was going to say, it must’ve been very hard to wear?

 

It was very uncomfortable, and it was very difficult to wear. But, we got through it okay. And-

 

And how much of your arm does the sleeve cover?

 

It covers from the wrist to the bicep.

 

Right.

 

And, it’s- it’s a nuisance but by the same token it’s obviously doing good. So, I did ask the lymphoedema practitioner, what degree of lymphoedema I had and she was quite adamant that it was a very mild form of lymphoedema, and that was confirmed by my breast care nurse as well.

 

Right.

 

I asked her as well. So… where do we reach now, are we- luckily- oh they gave me, my own doctor gave me a week’s worth of antibiotics just in case I did get bitten out there, to take with me, just in case. And thankfully, touch wood, we came through it. The only person who was bitten was my wife. (Laughs.) God bless her.

Eddie chose not to have chemotherapy on the basis of the information he was given, but he felt there was no choice about whether to have hormone treatment.

It was going to be my decision whether I had chemotherapy.

 

And/or both, radiotherapy. And when- my operational consultant surgeon had already spoken to me about this earlier, some period before that. I think it was the first time he saw me after the operation. And he said that it only constituted five percent of a recovery. Five percent difference in actual fact, whether I had chemotherapy or not. And… at all times it was quite obvious- they were quite adamant I was going to have hormonal therapy.

 

Right, so they said that right- almost from the beginning?

 

Right from the virtually- right from the word go. I mean I was going to be on… tam (verbal stutter)-

 

Tamoxifen?

 

Tamoxifen. I never get it. But I asked them if they would let me think about it for a week, because I didn’t particularly want to- I didn’t really want to have chemotherapy, and radiotherapy never actually came into the equation.

 

Did it not?

 

No it didn’t. For some unaccountable reason. The word was never used. So they were not thinking of that, having that in mind at all. So, they made an appointment for me to go back- whatever happened, tamoxifen was going to start that following week, whether I liked it or not.

 

So you weren’t given much of a choice about the tamoxifen by the sounds of it?

 

(Overtalking) Not about tamoxifen no, no. So that was- went back the following week, and- oh and it was then that we discussed the survival rates, not the other one. And he came up with a figure of eighty percent if I didn’t have chemotherapy, and eighty five percent if I did, which was consistent with what the operational consultant surgeon had said. And …I went back and I said to him, “Look”, I said, “can you give me these percentages again” and he put them up on the screen. There was some study that the Americans had been doing.

 

Anyway we just- we went through the percentages and I just turned to him and I said, “Look”, I said, “I’ll stick with the hormonal… therapy, I certainly don’t want- and” I- at that particular time I was sixty nine, I said, “At my age I don’t think… I don’t want hair loss and all that sort of thing and everything, and all the bad side effects that go with it”. I mean if I’d be a lot younger person then possibly I’d have gone with it. 

Eddie's children were very supportive. His son was really helpful in driving him to and from appointments.

And you mentioned that you had a son, did you tell your son quite soon after you’d been diagnosed or-?

 

Yes, the whole family were made aware of it. In fact he’s been- they’ve been extremely supportive as well, obviously. I have two daughters and a son, and four grandchildren. So they’ve been very supportive. But, yeah, my son in actual fact was there for transport and when dropping my, or bringing my wife home when I went into hospital, so things like that and…

 

Yes, that’s very-

 

He’s always there. He’s always there.

 

That’s a nice way to speak about your- your children.

 

Well yes, it’s absolutely right. But… They’re always there. But we’re not the closest of families by any stretch of the imagination, everybody’s got their own lives now. I mean they’re in their forties, all three of them are now in their forties. My younger daughter was forty last weekend. So. Or the weekend before last I should say. So, they’ve all got their lives to live, their children and all that sort of thing, grandchildren we do… we don’t see each other perhaps as much as we should, considering they don’t- two of them live in [place] and one of them lives in [place] I mean I see more of my son in actual fact, than anybody else.

 

You must’ve ??…

 

Yeah. He was very. Well, when I use the word handy I don’t mean that again in a flippant way, but it was…thankfully necessary that he was close by. You know when- for transport and things like that. I couldn’t have driven, obviously (laughs.).

Eddie used to be self-conscious about his scar but now thinks that no-one seems bothered by it. He has felt self-conscious about wearing a compression sleeve.

So, just before I went- we went on holiday, they fitted me up with a compression sleeve.

 

And that had to be worn all day, but could be taken off in the evening, you know socialising and things like that and what have you. Cause you got very sort of self-conscious about it. Also I was extremely self-conscious about my scar on my chest, where they’d taken my left breast off. And, wouldn’t go into the pool and all sorts of things. But of course the most uncomfortable thing is this sleeve, of course, because it was so hot out there.

 

I was going to say, it must’ve been very hard to wear?

 

It was very uncomfortable, and it was very difficult to wear. But, we got through it okay. And-

 

And how much of your arm does the sleeve cover?

 

It covers from the wrist to the bicep.

 

The only time as I said I felt self conscious was on holiday, you know, because there’s a scar and...

 

And do you still have that feeling- I don’t know if you’ve had a chance to go away on holiday since then?

 

No we’ve been away on holiday since then and it hasn’t bothered me.

 

So you’ll just be able to go around, you know with your chest exposed as you normally would have done in the past?

 

Yeah, yeah, yeah.

 

You don’t feel like you’re getting any reactions from other people?

 

You might get the odd glance, I mean, I’m sure you- I think they glance more at the- the sleeve than anything else. It’s not exactly- what’s happened was is that I’ve used bio-oil ever since I’ve had the operation. .And the scar is virtually- you wouldn’t even notice it. What you may notice is that I haven’t got a breast. But that doesn’t- no-one seems to be bothered with that. They’re not going, “Oooh look he hasn’t got a breast”, you know, it doesn’t happen. You know.