Ann - Interview 2

Age at interview: 58

Age at diagnosis: 56

Brief Outline: Ann was diagnosed with DCIS in 2005, aged 56. She had a mastectomy and LD flap reconstruction at the same time. She is currently taking tamoxifen.

Background: Ann is a married careers advisor with one adult child. Ethnic background / nationality' White British

More about me...

Ann went for a routine mammogram in December 2005 and had been for two before this one. She was not worried when she was recalled because she didn’t think there would be anything wrong. She was given several tests and found having a biopsy frightening. She was shocked when told she had DCIS because she’d had no symptoms, and very shocked to hear that she would need a mastectomy. She had not suspected any problems and a mastectomy seemed very drastic treatment. She was also offered breast reconstruction, which would be done at the same time as the mastectomy. Ann felt that she had no choice about having a mastectomy and found this very difficult to accept. She wanted to know more about why a mastectomy was needed and felt concerned when, after surgery, less DCIS was found than doctors first suspected.

 

Ann had an LD flap reconstruction, which involves moving a large muscle and some overlying fat and skin from the back of the body to make a new breast. She also had some lymph nodes removed. Ann had some pain and discomfort after her reconstruction and had some physiotherapy privately, but this did not relieve the discomfort completely. She will be having further minor surgery to treat the discomfort. After this, she would like to put the whole experience behind her. Ann said that, rather than the DCIS or cancer, her main concern has been the discomfort she has been having since her reconstruction. She was offered radiotherapy and chose not to have it, and is currently taking tamoxifen.

 

Ann would have liked more information about' who to contact about concerns or queries after breast surgery, even several years on; the possibility of a DCIS diagnosis before attending for routine mammograms; and who each health professional treating her was.

 

Ann said she received a lot of support from her husband, sister and colleagues, though also felt that she would have liked to talk to other women in the same situation.

 

Ann was interviewed for the Healthtalkonline website in 2008.

Ann wanted more information from doctors and felt asking questions was important.

I think, as I mentioned earlier, I think for me I would love to have had a booklet about breast screening and, you know, the type of doctors you were seeing, what they were trying to look at, the whole process. Whether I just missed out on that I don’t know but I do feel quite strongly that, you know, that it did all, it’s a little bit mish-mashed with me. And, as I say, it may have been Christmas but I think people should be given a good, well-written booklet, not just saying things that normally, you know, ‘everything’s all right, occasionally we find this’ but, I mean, I think is it, I have got one upstairs. What is it, Backup or something, that’s produced one. And I found that weeks, months afterwards and I thought this is what I should have been given when I went into that.

 

I do think good information is important. Don’t, I mean, it’s, explain and don’t feel defensive if people are asking you why that. I mean, you know, medicine is built up on all sorts of knowledge and statistics but, you know, they’ve learnt that so I don’t see why they shouldn’t justify why they have to, you know. And there are variations in things, I’ve realised that now. You know, if I’d gone somewhere else for my operation I might have had a different, I mean I was offered different types of reconstruction but again how do you make your mind up? I don’t know. It’s very difficult. And things like, you know, taking the lymph nodes out, and that isn’t done everywhere now. I didn’t know that. Where do you get that information from? And in fact what do you do with it then is a problem in itself. But I suppose, as I said, people who do that, ask that, must be harder work for the medical people. That’s what I felt. I felt I was being, you know, I was hard work.

Ann fainted when doctors told her she'd need a mastectomy. She'd expected nothing to be wrong and was extremely shocked.

Well you just go in and this particular surgeon, you know, there’s no, he just tells you, that’s it. And I just, he has, well, we had drawings of it and I think it was the word mastectomy that actually, oh, I just, I just fainted, I just went completely. It was, it was such a shock. And.…

 

We can just have a little break if you need to.

 

Yeah. I suppose there’s no easy way of telling people. And I don’t know if, I’ve never been ill in my life, I’ve been fortunate, I haven’t had a lot of traumas in my life but that was the biggest trauma. And it was a physical shock. I hadn’t… Anyway, I was allowed to come round and the next thing I could hear the surgeon, you know. And because, I mean, again they might, I understand there’s some sort of national standard but they found one patch which was 4cm and, you know, he said that, you know, if it’s 4cm it’s a mastectomy. And I just couldn’t believe that. And I just thought, “Well, I came in here not thinking I had anything wrong with me and you’ve found one little spot – or maybe it’s quite a big little spot – but it’s in one place and this is supposed to be prevention, you know.” It is quite hard to take.

Ann has had a lot of pain and discomfort since her reconstruction. She had a tendon cut to ease the pain and will be having a nerve cut soon.

I have been unlucky with my LD flap I think because I was in quite a lot of pain and I don’t think people believed me actually. I know that sounds awful but that’s how I felt, people didn’t believe me. I went to a physio for two, privately I went to some physio for two sessions several times because I just felt everything was pulling across the front. So I had the operation in February, and this is two years ago now, and people, you know, if you ring up anybody or talk to your GP, I think four to six months they expect a few aches and pains, all right, get on, you know, no problems. But this was going on October, November and I was still, and in fact it was the physio that said to me in the end, she said, “Well, I can’t stop that. You know, I can’t, when all this exercise, it’s something that’s in…” And that, I did get myself in a state because I was in quite a lot of discomfort and I used to wake up every morning feeling exhausted. And I was getting emotionally all wound up as well.

 

So when I went back for my yearly check, I was pretty desperate actually. I was feeling but, and this is where, I don’t know if I want to say all this really but it was, I got very upset because I felt I had to be very assertive in there and say, you know, apparently lots of women have sort of various party tricks my surgeon called them. And I was just so angry, it was not a party trick. I was, you know…But anyway, he did offer me, offer to cut the tendon. So that was a year, well no, the tendon was cut last June so that was, but it took me a few months to get round to deciding I had to do it, I was getting so, I really was getting very down actually. I was because I couldn’t see a way out. I felt this was, and in the meantime my dad died and I had three or four months that was pretty, you know, going back and forward. It was just, OK, it’s all right. But, you know, looking back, it was a tough time.

 

So when I was ready I went back and I said please could, I’d like the tendon cut. But I am, you know, I was a state. I don’t reckon, so by this time I really almost got to a stage where I had a phobia about going back. But it was a different experience going in on a weekday, I have to say. The staff, you know, you don’t feel that there were people that were talking to you while you were waiting. The whole experience was different. And I also knew, of course, it wasn’t such a major operation. I knew that. I was so, so hoping it would make things better. So, you know, that’s what happened.

 

And I did go in and I was, I could feel relief immediately he did it because I had, used to get this great tightness right across my chest. I couldn’t breathe sometimes, especially at night. So it was a great relief and I did thank him very much and, you know, he’ll quote that he went in and said you know I felt like a new woman. I did. But unfortunately, as far as I’m concerned, I still have a lot of movement across my chest. I still have, and to be fair to my surgeon, he did say probably a few months in to when I first went in there that you know, if this movement was still there the nerve would have to be cut.

 

So I don’t know whether cutting the tendon was supposed to sort it all out or whether that was just part of the procedure but, you know, when I went back sort of four or five months after the operation that was cutting the tendon, I just felt that I was still wasn’t happy, I couldn’t, still feel it moves. I can feel it now all the time. There are certain things I do that it really gets aggravated.

 

Have you been back to mention this?

 

Yeah, yeah, I’ve been to see my surgeon but in the meantime by GP sai

Ann wanted to talk to other women who were at the same stage as her and trying to make decisions about treatment.

The other thing I haven’t mentioned but I was desperate to meet other women, I really was. And I didn’t have that opportunity. To be fair, the hospital here, a woman did ring me up, they did get in touch with someone who’d had an LD flap who, you know, some years, well I don’t know, four or five years before. She was very upbeat and everything and it was quite nice to talk to her at the time but I think, because I was in a slightly different frame of mind, she wasn’t the sort of woman I felt at that time I needed. She was too far down the line probably and too gung-ho about, “Oh it would be fine, shall I come with you? You know, everyone’s lovely there.” And I was coping with all, I don’t think everyone’s lovely there. You know, all this sort of stuff. And after that I’ve failed to meet anyone through the hospital.

 

I went to the local breast care group a couple, I’ve been two or three times. Again it’s a social group really and I wanted to talk to people who actually were sort of in the process of making some of the decisions I had to make. That’s why I used to ring up Breast Cancer Care. I had a couple of conversations with the people there about when, you know, again I did speak to a woman about her LD flap. Again she was very positive about it and so that was fine.

 

But I believe even the local hospital now, things have moved on a little bit. They’ve got a group going for people who are newly, or would feel the need to meet other people. Though I think at the time I was, you do, well I did anyway, got a little bit selfish, I only wanted to talk about me in a sense, I really only wanted to talk, to identify with someone who had something very similar. You know, I didn’t want to talk about people who might be having chemotherapy. I just wanted, and that’s the sort of selfish thing you develop at the time. I just couldn’t cope with anyone else’s …But I did really want to talk to people, I know I did. And I found that, you know, I think I found that for quite a long time after, not just the DCIS, but the other stuff.

 

So, I suppose I ought to say, when I went for my second opinion with, he has a different, he actually introduced me to some of his ladies as he calls them. And I found that very helpful. So, you know, if I go and have this nerve operation I’ll have, what I said to him was I haven’t actually met anyone who is happy in the sense that, so he said, “Well I’m here in the clinic today and I’ll.” and he found two ladies who actually could talk, they showed me what theirs was like. And mine does move rather more than theirs. So, in a way, he was sort of saying, well, yeah, yeah. So that all took a bit of time and I think, I don’t know, as I say, we’re going back.

Ann wondered if she'd had symptoms but had pushed them to the back of her mind. She thought she'd have a lump if there was anything wrong.

I’ve tried to think back. I’ve said, “Am I really kidding myself that there was nothing that I suspected about how my breast was?” And I suppose I have to, you know, again maybe I’m trying to convince myself but if I’m totally honest I had been going to the doctor about, what, a sort of tightness across my …. And I always said, “Oh, I’ve got the … you know, family would say, “You’ve got an awful cough mum. You know, why don’t you go and sort it out?” And I had been a couple of times and in the end she’d sent me for an x-ray to look at my chest. They found nothing. Given me an asthma test, they could find nothing. But there was always this feeling of tightness across there.

 

And also I think, well as I said, my father was ill but I’d lost my mother in 2003. And that was quite difficult as well because, as I say, they were miles away. But my sister and I shared it between us. But I do remember when she was ill getting some slight panic attacks and feeling that there was something pressing on my, deep down inside me. But I didn’t used to worry about it. I thought, “Oh it’s, I don’t know, indigestion or something like that, you know.” And it used to come and go and, as I say, I suppose my life at the time was so, I had so many things to think about that I think, and I thought I was getting older, maybe this was just old age, you know, something that explains …. But I suppose, looking back, maybe there was something there. But I genuinely had never ever thought it was anything to do with my breasts. And, as I say, I had been to the doctor a couple of times and we’d never sort of gone down that thing at all.

 

So, you know, I had no lumps as such. But it did seem to be getting a little bit heavy, my boob. So maybe there was something there. But that’s in retro, you know, looking back on it. And, as I say, I’ve spoken to so many of my friends and they’ve never heard of DCIS. You know, if you read anything it’s all about lumps and bumps and things like that.

 

But it still feels very, it still feels very dramatic to me, that you go in with, not even, maybe you have, maybe I did have something but I certainly hadn’t acknowledged it. And I don’t think it was because I was consciously pushing it to the back, how you might do if you found a lump maybe. I really, that was quite genuine. So the whole thing, you know, I found it quite tough I suppose.

Ann felt uncomfortable and vulnerable having a biopsy. Having her husband with her helped.

I went into the room for the … not really knowing even what the procedure was. But maybe, I don’t know, looking back maybe I would’ve been on the floor if I’d known what the procedure was. So maybe it was a good thing. And again I remember talking presumably to the radiologist that does that. But I didn’t know all these terms at the time and I remember asking directly, “Well, you know, when you do these things, how often do you find anything?” And again he didn’t look me in the eye. I didn’t, that really. ahh, and that’s when I began to feel that, you know, but he did say something like 80% I think not finding anything, so I suppose, again you know my brain was saying, “Oh it’s going to be all right.”

 

So we went ahead, and I must admit I didn’t know what, I hadn’t even, no concept of what the procedure would be. I don’t know if I need to talk about that particularly but it is a bit [sighs] …

 

You can if it was something that was important to you at that stage, or …?

 

I just remember thinking, “Oh what,.” I mean, the way you have to lie on the table and you have to put your breast through it. I found that quite, I am, you know, I know I’m very touchy about hospitals and medical things but I did find that, I don’t know how you would describe it. I suppose it was frightening and a bit sort of, well it’s such an unusual position to be in. It makes you feel almost not like a person, I felt very vulnerable, anyway, it’s fine. They went ahead all right and, as I said, they were very kind and everyone was, you know, talking to me and all that. So I think it went all right.

 

I mean, the procedure itself, they do make sure everything is numb and, as I say, once it was over, I felt the positive relief in the room. Everyone seemed relieved that they’d finished. Anyway, OK, so that was that. And, as I say, I did find that quite, I did come out shaking a bit out of that. I was feeling a little bit, so I was very pleased that my husband was there. Anyway, so we waited a few minutes I think and then someone said, “Oh well, you’ll come back and see Mr so-and-so.”

Ann sometimes wonders if she really needed a mastectomy. She tells herself there's no point in thinking like that now and is happy with her reconstruction.

I have to accept that, as well as the length of this, of the DCIS, the surgeon said where it was meant margins might have been difficult. I think I’m right, I hope I’m not misquoting him, so it was the whole package I suppose I had. It was where it was, the length it was and maybe the type of DCIS. But there was still a little bit of me that said, “Well, ahh, if it had been 3.5, I mean, if they can make it 4.4, it could have been only three, you know. But I also, again my head was saying, “It’s no good going there and it’s gone.” You know, I couldn’t stick it back on again.

 

Yes. Was this when you were thinking maybe I could have not had a mastectomy and …

 

Yeah. Yeah. But again, as I said, I’ve had to think to myself, well, you know, that’s it, whatever the right or the situation, it’s gone and I can’t stick it back on again. That’s what I used to say. So, I mean I’ve got a lovely, lovely, new boob and I always said that I liked what I saw. Never had any problems with that.

 

Right from the start?

 

Well, more or less. Yeah.