Patricia - Interview 7

Age at interview: 54

Age at diagnosis: 53

Brief Outline: Patricia was diagnosed with DCIS in 2007, aged 53. She had a mastectomy and LD flap reconstruction six months later. She will also be taking hormone therapy.

Background: Patricia is a married clerk with two grown up children. Ethnic background / nationality' White British

More about me...

Patricia went for her first routine mammogram when she was fifty and the results were normal. She had her second one at the age of 53 and was recalled. She felt ‘devastated’ because she’d had other health problems previously and did not want another one to deal with. After tests, Patricia was told that she had DCIS as well as a lump, which turned out to be grade 3 invasive breast cancer.

 

Patricia said she wanted to have a mastectomy ‘to get rid of’ the cancer though, shortly after agreeing to have one, felt quite strongly that she didn’t want a mastectomy. She felt very upset but didn’t tell anyone that she had changed her mind. She had a mastectomy and breast reconstruction six months afterwards. She had an LD flap reconstruction, which involves moving muscle and overlying skin from the back of the body. After the reconstruction, she felt emotional and received some counselling.

 

Patricia only found out about DCIS after her own diagnosis and felt that, had she had DCIS alone, treatment decision making would have been more difficult. Shortly after her mastectomy, she started taking tamoxifen. Her treatment plan included having tamoxifen for two years and exemestane (Aromasin) for three years. However, she had hot flushes on tamoxifen and, more importantly for her, felt very emotional. She took it for a year but, because of how it made her feel emotionally, after seeing her oncologist, she stopped taking it. She said that, once the tamoxifen was out of her system and after blood tests, she might be prescribed Arimidex for three years and, at the time of interview, was unsure which hormone therapy it would be.

 

Trish was interviewed for the Healthtalkonline website in 2008.

Patricia was glad to have breast reconstruction because she disliked wearing a prosthesis and...

I had the mastectomy in the February and I had my reconstruction in the August. I think it was a long time and if, but I’d already had two general anaesthetics in a very, very short time, so it was probably a good idea for me to wait.

 

Did you use a prosthesis or anything in between times?

 

Yes, I had a prosthesis. And my husband and I had a trip to China and that was so uncomfortable, but, oh it was just so hot, so sticky, and I really, really was looking forward to my new breast. And we came home from China and two weeks later I had my reconstruction. And it was great. Came back with no bugs this time.

 

How did you feel in between that time? When you were using the prosthesis. How did you feel in terms of your own body image, which other people have talked about and a lot of people also talked about how they felt about not having their breast there any more.

 

I really did not like walking into the bathroom and seeing myself with just one breast. That was horrendous. And also because of my various health problems, I can’t wear short skirts. I wear very long ones to cover up some problems I have with my leg, and then I was having to wear high necked tops because if I wore a V-neck top the prosthesis fell forward and you could actually see the scars. And I found that very, very frustrating that I couldn’t just get up in the morning and put on what I would like to wear, I had to think about what I was wearing.

 

And at one point on my trip, when I was in China I realised that the top I was wearing was gaping slightly, and so you know I was hunting around for safety pins, I felt very, very conscious of it, but balance wise it looked okay, you know, when you’ve got your clothes on, it did look alright. And the breast care nurse spent a lot of time making sure that I did look well balanced, probably more so than I do with the reconstruction as it is at the moment.

Patricia agreed with the doctor's advice but, later, felt upset about having a mastectomy and...

We went back and the very smiley doctor looked a lot, even more serious than when she was telling me I had cancer, and I thought, “Oh, I don’t like this.” And she then started to explain, or asked me how much I’d remembered from the previous appointment. And I said not very much because I was so shocked. And then she started to explain about the pre-cancerous area as well as the area of the lump and I just remember turning around and looking at my husband, thinking, “I’m sure this is more serious than she said last time.”

 

But of course, you know I had very vague memories. And then I remember just saying, “Oh in that case I want a mastectomy.” My friend had had a mastectomy twenty years previously, she was doing very, very well thank you very much, and I just wanted to get rid of it I think. And then my husband said, “Well is that really necessary?” And the doctor said, “Well, in situations like this, it’s not ever the wrong decision.” But I don’t think I really knew what DCIS was at that time at all.

 

Had they used the word DCIS?

 

No, she just said pre-cancerous area. And I think, you know in my head I was thinking well, if they’re going to take two big lumps from my breast, they may as well take the lot ‘cos they weren’t that big.

 

I don’t really remember, oh yes, then we went, had to go and see the surgeon, and he drew a picture of a breast and did lots of specks all over the breast and said, “Oh, you know, it probably is a good idea to have a mastectomy.” And I was going along with whatever was being said to me at that point.

 

Then a few, you know, a few days later I was getting upset and said, “Look I don’t want to go through with this any more.” I said to my GP, “I don’t want this anymore.” But at no point did I actually say, “I definitely don’t want the mastectomy.” And I know that, and I also knew that I could make myself sound a lot more confident than I actually am, and she, they probably all believed me when I said, “I want a mastectomy,” you know. Because I didn’t, you know, I didn’t really totally understand what was happening to me. I know I had, I knew I had cancer, I knew I had a lump.

 

I then, on the day of my pre-op assessment, I asked the breast care nurse to meet me. And I said, “You know the surgeon wouldn’t be doing this if it wasn’t necessary?” And she said, “No, he wouldn’t.” And even then, although I was getting upset, I didn’t want the operation, I didn’t say, “I’ve changed my mind.”

 

About any operation, or about the mastectomy?

 

About the mastectomy. I knew I had to have the lump removed. I knew it was sensible to have both areas removed, but I hadn’t, I couldn’t actually bring myself to say, “I don’t want the mastectomy anymore.” Because you know, in my heart I was thinking, well it, you know it would make life so much easier, but I, sort of, at the same time you do, I haven’t got the most wonderful of body images, so the thought of losing my breast as well, you know, it just was just too much.

Patricia was in tears just before surgery because she didn't want a mastectomy. The operation...

On the day of the operation I hadn’t really, I hadn’t really cried. I’d had one day when I’d got upset because of everything else that had gone on and I just thought, “Oh, one more thing, I can’t cope.” But on the day of the operation I just broke down as soon as I saw the nurse. And I cried when I saw the nurse. I managed to bite my lip when I saw the doctor who was assessing my health, and then by the time I’d got to see the anaesthetist, and he was talking to me, and he said, “You’re not looking at me.” And I just burst into tears and said, “I can’t do this anymore, I don’t want to, I just don’t want it.” And he was stroking my head, he was being really kind and my husband was saying, “She’s been so brave till now.”

 

And then when the surgeon came into the operating theatre to say good morning, or into the little ante room, even then, just started joking with him, I couldn’t, couldn’t say, “Just don’t do it, I don’t want to do it, don’t want it.”

 

And then I coped okay with the mastectomy to be perfectly honest and because I’m, I like my sport, I was doing my sport anyway, you know, I managed to just get on with it.

Patricia was recalled after her second routine mammogram. She was extremely anxious and convinced...

I went for my first breast screening when I was 50, fortunately we were caught, I was in the right round, so I went for my first and that was clear, no problems at all.

 

And then just before Christmas, when I was 53, went for my second one, and I remember the day so vividly because we’d had morning coffee with some friends and my friend said, “Oh, we’ll go into town shopping, but we’ll…”, I said, “Well I’ve just got to go and have my mammogram.” We couldn’t find anywhere to park, so I left her in the disabled car park, and shot in for my mammogram. Had it done. Shot out. Wished everybody a merry Christmas, and thought no more about it at all.

 

And at one point over the Christmas Holiday I remember, my friend had had hers done the week before, had said, “Oh only took a week and I got my results.” And I thought, “Oh I wonder why I haven’t had my results back. Christmas Post.” And thought no more about it again. And was then booked to have a routine operation for something else, and after I came out of hospital two days later there were two letters for me, one from the ENT and one from the breast clinic calling me back. And I was just devastated. I’d had a lot of ill health. And I just couldn’t believe that something else was happening. And no, despite what anybody said, I was convinced it was going to be cancer, despite what my husband said, what my friends said.

 

So I went along that day hopeful that it wasn’t, that there was not, nothing very much. But the fact that there’d been nothing there three years previously made me think that perhaps something could be wrong.

Patricia feels she would have recovered quicker if she'd had an immediate breast reconstruction...

When you looked at it, were you happy? You mentioned that you might have a nipple put on later.

 

Yes, I’m going to have a mastopexy, when they lift the other one, because obviously having been a mum and breast fed, one’s a lot lower than the other, so she’s going to lift that and then she’s going to give me a nipple to match, and then we have the area tattooed to make it look as even as possible.

 

And how have you felt emotionally in terms of having the reconstruction, having the mastectomy first?

 

It would have been nice to have had the reconstruction straightaway. I’m sure I would’ve recovered emotionally perhaps a lot quicker if I’d had the reconstruction first, but if I’d had to have radiotherapy and then had to, you know, it’d had all hardened, in the end it would have just been one more ordeal. Most of the time I’m pretty resolved about everything that I’ve gone through. You just, you know, it’s happened, there’s nothing I can do to change it, so just get on with it.

Patricia's husband seemed more attentive and in tune with her.

I was silent, I was a lot less chatty than I would normally be. And the nice thing about, I think the fact that it was just my husband and I at home at that time, without either of the children, because they were both off doing their own thing, was that I could just talk to [husband’s name] whenever I felt like it. And when you’ve been married as long as I have, you tend to find that you’ll be talking and they’re not really listening, you know, you get the grunt, you get, but it was so noticeable that he was listening to me because he would just respond with a really sensible answer, you know. Whether it was a something like, “Oh I wonder how long I’ll be in hospital for?” And he’ll say, “Well they’ve said two or three days.” You know he would respond straightaway, he was listening, he was in tune with me, and I think that was the greatest consolation to me, that he was aware of what I was going through. And presumably he was going through it himself in his own way. And worrying.

Patricia didn't like being on the ward after surgery. She didn't have much pain but her arm felt...

I think after the mastectomy I was only in two nights. That was a dreadful experience. I would have preferred a side ward which I did have for after my reconstruction. I just did not like being in the medical ward with all the, you know, confused, elderly old people.

 

Yeah. So you then came home?

 

Yeah.

 

How did you feel coming round, were you in pain, and also once you got back home?

 

I wasn’t in too much pain after the mastectomy. Yes it was sore and you’ve got the numb arms. I think I must’ve coped pretty well. I did have nerve pain; I know I did have to go back to the GP for some more pain killers. I did have nerve pain, but not as bad as I thought it was going to be.

 

And did you, well you were in hospital for a couple of days, did you look at the scar at that point, or there were bandages over it, or…?

 

There was a dressing on the scar until the next week or so, and we had to go back to the clinic, and a really nice nurse took it off. And she did actually cup her hand so that I couldn’t see unless I wanted to see, but I wanted to see. I wanted to just get, I wasn’t going to allow myself to not look at it, I wanted to see what it looked like. And I, you know, I just accepted that it had gone and that was it. Then we had to see the surgeon again, and then she discussed the results of, and it was at that point that she told me that I didn’t have to have radiotherapy because it wasn’t on my chest, the lump wasn’t on my chest wall.

Patricia described what happened when she had a sentinel node biopsy. Although she found it...

The sentinel node biopsy was done the night before the mastectomy. As I said earlier, by that stage I was getting to the point where I really did not want to go through with it. I would have done anything not to have to have gone through with the mastectomy. Went for the sentinel node biopsy the night before and they injected me into the nipple, and the doctor who was giving me the injections said, “Oh this won’t hurt.” And it did. And I started crying at that point, in fact I think I might even have screeched a note, and he looked really shocked.

 

One of the nurses said, “Well some people possibly have more nerves than others round there.” But it was actually quite fascinating. If it wasn’t me on the receiving end it was quite fascinating what you can, what they do. ‘Cos they put this dye into your nipple, the injection into your nipple and then I could just about crane over my, like looking over my shoulder, and you could see the outline of my body and with this colour going from the nipple up to the nodes. It was quite fascinating.

 

And after the mastectomy when the surgeon was telling me that it wasn’t in my system, that they’d actually taken three nodes away because three of mine must’ve been quite close together, so they took all three just to be sure, and it goes blue so when you go to the toilet for the next three or four days, you pass blue water, which is quite funny. I’m glad that that was the option, because I play a lot of sport, to the thought, having a complete node clearance and the damage it could’ve done, the possibilities of lymphodeama, that would’ve just, I don’t know, would have been devastating really.

Patricia had invasive breast cancer and DCIS. She feels that making treatment decisions for DCIS...

I think if I was found to have DCIS in the other breast, I would be devastated because I think you’ve got to make more decisions if you’ve got DCIS. If it’s a lump you know it’s got to go, if it’s DCIS do you wait and see whether it becomes cancer because, you know, as far as I’m aware nobody really knows do they? Whether it will or not. And do you then go through yet another traumatic mastectomy, reconstruction? That bothers me more than the fact that I may have breast cancer. Because then you’ve got to make decisions.

 

So you think it’s harder to be diagnosed with DCIS than invasive breast cancer?

 

Yeah, because, well, I mean obviously it’s hard and if it was in your system it would be devastating knowing that you’ve got to go through with the chemotherapy round and whatever. Because I’d had a lot of health problems, the idea of chemotherapy was really worrying me because I really didn’t think I would cope. But, I just, but it isn’t until now that I really know what DCIS is.

 

So you, you had some information from the doctor that said DCIS?

 

No, not really. It was just on a letter. It was the letter that he sent to the GP and to the surgeon just saying what, discussing the treatment that he was going to give me, that you know, that was going to have tamoxifen for two years and exemestane for three years.

 

That was the first then you kind of realised?

 

I’d actually saw the letters DCIS yes.

 

Did you look for more information? How did you find out more because you sound like you would know quite a bit now?

 

I’ve been looking on the breast care backup website and whatever, and reading odd little bits. And the areas, I don’t know, I think perhaps they could’ve reassured, when the surgeon drew the picture of my breast and did specks all over it, in hindsight that was a little bit of an exaggeration, you know, perhaps somebody could’ve talked me through it a little bit better.