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 mor – 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 justI 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

So what happened once they’d given you the diagnosis, did they talk through treatment options then with you?

Yes. Yeah, I mean well. There weren’t many options really. I mean he just said, Look, it needs to come off So I said, Right, get going, get on with i.

So you were quite happy with that?

That’s the wrong word to use [laughs]. But whatever the word is, I was up for it, because I felt that that was my alternative and that was what I’d have to do.

Okay.

It wasn’t a question of you know having an alternative really. Well I had an alternative, don’t do anything about it, but I mean what sort of alternative is that?

So although you didn’t have a choice in your treatment, you were quite prepared and happy to go along with what he was suggesting, which was the mastectomy?

Well yes. I mean, this is one of the problems, isn’t it, when you’re in that sort of situation. You’re, you put yourself into other people’s hands, who you hope, hope and pray, know what they’re talking about you know. Which you know it’s quite a daunting thing really isn’t it? You know. And you hear all sorts of funny things as well but, you know incompetence and you just wonder what you- but at the end of the day you’ve got a decision to make and really, well it’s hardly a decision at all, you’ve just got to go down that road.

Did they give you any choice in further treatment after the surgery, were you given any options, there? Like whether to have radiotherapy or chemo or-?

No.

That was just all set out as well.

Yeah. They advised that I had the chemotherapy.

So did he then discuss the options for treatment then?

Well, there wasn’t very much in the way of options, you know, there was a necessity to throw everything at it, basically, and I had no problem with that. So there wasn’t very much discussion about options because I was very happy – I encouraged him to throw everything at it. So it was agreed that I would have radiotherapy and chemotherapy and then longer-term preventative medication. So I had six cycles of chemotherapy, and I had radiotherapy over, you know every morning over a couple of weeks. And then they got into the longer haul of – well, sorry, I had Herceptin as well. So I had Herceptin for twelve months, and that coincided with having tamoxifen.

Well did they say to you, you know, you could have a mastectomy or you have to have a mastectomy or- did they discuss chemo or radio, did they, did they include you in the discussions or did they say you have to have- X Y and Z?

No I think they said I had to have a mastectomy. I had to have that, aye. I don’t think there was another option.

Right. And what about the radiotherapy? Was that an optional thing?

Well, they says to me at first, that it’d likely be tablets I’d be on. I don’t know what kind of tablet it was they were going to give me, maybe tamoxifen, I don’t know. But, when Doctor [name of doctor] or something, he said that he wanted- I’m sure it was him that said he wanted to give me twenty days. Just as a precaution. So.

And how did you feel about that?

I was fine with it. You know. Anything that’s helping me, I’m fine with you know.

So you didn’t mind that they weren’t giving you sort of choices as such?

No, I was fine with it you know. I canny explain it any better darling, you know.

So were you given a choice in your treatment?

Well I was just told what they were going to do. You know it was have the breast off, chemotherapy and radiotherapy. I did query the radiotherapy with my GP, cause I got a little bit of a sense that the- the guy that does the chemotherapy and that was a- oh yes, boom boom boom without any thought. I got a little bit of, you know, I felt the- cause the surgeon, okay I saw him, and then the chemotherapy by another- a doctor. And I was- anyway, fortunately the- my surgeon who I got on very well with, he had written a letter to my GP, recommending the treatment that I had. So I was quite happy about that. But it was the sort of cavalier way in which it was presented to me, and I thought, hang about a bit, you know.

But as I said, you just accept that you’ve got to have everything that they tell you, until you start, you know, I’m sat in the chemotherapy room, going back to the chemo days now, but we’re in a room where there were maybe, you know, eight to twelve people and obviously all women cos they were all breast treatment on the same day, and you listen to them talking. Oh, what kind of trial are you on Oh, I’m on this tria and oh, I’m on this trial Oh, I’m not having radiotherapy, I’m just trying this chemo I ain’t had an operation I’m going, hold on a minute, what’s going on here I were just told that I would be having a full operation, full mastectomy, I would be on chemotherapy and I would be on radiation treatment. There were no mentions of trials or what you want for this and what you want for that. I said what’s all these trials Oh, well, we were given the choic. I thought oh, weren’t a choice for me. I were just told. Why not a choice for a man? I’ve no idea. When I started asking, Oh, well, there’s no trials for men because there ain’t enough men get i, simple as, and it’s down to cost, like everything’s down to cost, soyou can apply for these trials if you want, so obviously you’re recovering, they say you can’t do anything, so you’re trawling the internet looking for info and you’re finding all these trials, and I put my name down for trials. Trial here, trial there, only to get repliesoh, we’re only looking for pre-menopausal women or we’re only lookingI said, well, I’ll never had a menopause in my life so I’m ideal obviously. Oh, but you’re a man, we don’t want me. Simple as, you know? So nobody wanted a man.

Did they, did you have a choice in your treatment?

Yeah.

You did?

Yeah. I mean, the surgeon, when she was discussing what would happen, she went through the options obviously, the mastectomy and sentinel node biopsy or complete lymph node clearance. She also discussed the option of, what’s it called again?

The chemo?

No. About where they take the flap of muscle from round the back
An LD flap?

Reconstruction… which was good because, you know, normally it would be just women she was talking to and she’d discuss that with me as well and whether I’d want to do that and if I did decide on that then it would be a longer operation and slightly longer recovery, cos obviously have to take the flap and put it round the front and this sort of thing. And then talked about the nipple and I said, well, after we’d thought about it, I said, well, no, I don’tit doesn’t really affect me as much as it would a woman, because, you know, I haven’t got a big chest and there’s not a lot up top for me, so personally it wouldn’t really sort ofwhen I’ve got clothes on, you wouldn’t really notice as much as a woman, so it was good that they offered that to me and I thought about it and I thought well, I don’t really want to go through a longer operation, for one, and longer recovery so I decided upon just a mastectomy.

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. Andat 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 ontam (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 went back and I said to him, Loo, I said, can you give me these percentages agai 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, Loo, I said, I’ll stick with the hormonaltherapy, I certainly don’t want- an I- at that particular time I was sixty nine, I said, At my age I don’t thinkI don’t want hair loss and all that sort of thing and everything, and all the bad side effects that go with i. I mean if I’d be a lot younger person then possibly I’d have gone with it.

The surgeon, he gave me some options for what they could do or they couldn’t do, but I went completely on his recommendation. I never chose – I could have had a possible lumpectomy and then treatment, and what have you, or bilateral mastectomy, which I said to him, basically, I’ll go on hison what he thinks. And he said it was such an aggressive cancer, that he thought the bilateral mastectomy was the best way, and me lymph nodes treatment as well – which I agreed to, obviously. Then they wanted to do a little bit of pioneering stuff on me, which I said, yeah you know, fine, no problem carry on.

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 month. 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.

Were you given any choice in what treatment you had?

Well, the way they do things nowadays, in the health service, you know? They don’t tell you. They suggest, you know? And you’ve got to make the decision, you know, which I find a bit strange – but that’s the way things are done nowadays, you know? They said, Well you know we recommend that you have radiotherapy, but you know, do you want it In fact, the chap, it was quite a young oncologist – he said, If you take no treatment at all, you have a sixty four percent chance of living for ten years you know? But if you have radiotherapy, then that’s increased greatly, you know So he told me that. But you know, I had to make the choice, you know? Yes or no, in other words.

Yeah – and how did you feel about that?

I felt as if he should be telling me, not just asking me, he should be telling me, you know? That’s just the way it is now, and I find that a wee bit of getting used to. That and the other, the way that they tell you, give you so much information now. That can be quite overwhelming, like when I went for my consultation to the [name of hospital], you know, they were hitting me with all sorts of information you know and trying to take it all in – that’s why they say that you should take someone with you, so that if you don’t pick it up, they will, you know?