Patricia - Interview 27

Age at interview: 57

Brief Outline: Patricia was diagnosed with DCIS in 1999, aged 53. She had a mastectomy and, about a year later, a second mastectomy because she felt unbalanced with only one breast and worried about recurrence.

Background: Ethnic background / nationality' White British

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Patricia was recalled after her first routine mammogram in 1999, aged 53, and was not worried because she had had no symptoms. After tests, she was diagnosed with DCIS and given the choice of having conservation surgery or a mastectomy. The doctor also advised that she stopped using HRT patches.

 

Patricia decided to have a mastectomy and said that, ‘If I had cancer in the breast, I wanted the breast removed and I was very positive about that.’ She also had some lymph nodes removed, which were all clear.

 

Patricia was concerned about the quality of her life without HRT and, after a team meeting, her doctors agreed that she could take it again. She was offered tamoxifen and chose not to have it.

 

After surgery, Patricia used a prosthesis but, in time, found it heavy and felt ‘lop-sided’ with only one breast. She was also concerned about recurrence. About a year after her first surgery, she decided to have a second mastectomy to remove her remaining breast. She said, ‘The thought of having cancer again in another breast was enough for me to make the decision I’m sorry I can’t go through another four years waiting.’ She chose not to have breast reconstruction.

 

Patricia returned to work afterwards but, along with other factors, became very depressed. She eventually left work and, at home, started reading more about DCIS and learnt that it was confined to the milk ducts. She started wondering if she had ‘over reacted’ but felt more reassured after talking to a breast care nurse.  

 

Patricia said that, had she not gone for a mammogram, she would not have known she had DCIS because she had had no symptoms. She did not know before her own diagnosis that DCIS or asymptomatic breast cancer existed and advised other women to attend for routine breast screening.

 

Patricia was interviewed for the Healthtalkonline website in 2004.

Patricia feels that women should be made more aware of symptomless breast cancers. It was only after her own diagnosis that she learnt they existed.

One of my concerns was that if I hadn't gone for this mammogram I wouldn't have known anything because I was always told, like lots of women, that you feel for a lump. There was no lump, there was no problems with the nipple, there was nothing like that at all, I had seen absolutely no difference in my breasts at all.

 

And it's one of the things that I have been concerned about these few years on that mammograms are not to be put across just because you have a lump. I think there's not enough information about the many different cancers that are breast cancer.

 

As I say, before I went into hospital I knew nothing of this, I didn't know there was so much, so many different cancers, I had no idea about gradings of cancer, I heard the ladies talking about it, I never asked about it. It wasn't of any importance to me until later.

 

I think it [breast screening] saved my life, probably. And I also think one of the things I do, or I have expressed to others is that it's important to have mammograms at whatever age. And I did read some, there was some research which suggested we shouldn't have so many mammograms. Well in my case I'm afraid it saved my life and I think that it must be gotten across to women and to men that it's not necessarily about feeling a lump. Because I think it gives the wrong messages out. One wouldn't want to alarm people, but I think it's important. If you have the opportunity, go for a scan, a mammogram.

Patricia knew straight away that she would prefer a mastectomy and was pleased with how the operation went.

I was asked if I would go in to see the breast cancer nurse, and it was the breast cancer nurse that spoke to me about the, that there were some cancer cells and I would need to speak with, the consultant was wanting to speak with me about it. She advised me about how I wanted to approach, whether I would, you know, if they needed to give me a mastectomy, did I want just a piece taken away, things like this.

 

And my response was that, if I had cancer in the breast, I wanted the breast removed and I was very positive about that. I think because of my age at the time, I think if I was a lot younger I may not have been.

 

I went to see the consultant in another room and he was very kind and he explained what was on the x-rays and that I would be better having a mastectomy. And I said I was quite happy to have a full mastectomy. And he also advised me to stop having the HRT patches. I’m afraid I wasn’t very happy about that, he said “You should not take them ever again.” I just accepted what he said at the time.

 

And within a week of that I was in hospital and I had the mastectomy. I knew what was going to happen, I’d had operations before so I knew what the procedures were. And I knew that I would have a drain or two. Because the other ladies in the ward I was in, they had them. And so everybody was very friendly that way and the nurses were wonderful.

 

I had the operation and it went quite well, everything was fine and I was up and about within a few days.

Patricia decided to have her remaining breast removed because she wanted to reduce her chances of getting breast cancer again. She would also feel more balanced instead of 'lop-sided'.

It was about a year later that I decided that I thought I should have the second breast removed and, given that I’d had the information that some women unfortunately did have another recurrence, I thought I would approach my GP, who approached my original surgeon and I went to see the original surgeon. And he said that he didn’t think there was a problem about me having it done, but there would need to be a second opinion.

 

And was there cancer in the other breast?

 

No, no, no. This was purely my, I was wanting to have that removed.

 

Just in case? Or ?

 

Just in case, but also because I thought well I might as well have the size breasts that I feel comfortable with, rather than be lop sided. And I got a second opinion and the second opinion was that it would be beneficial to me and probably ninety-nine percent beneficial in that I wouldn’t, it would be very unlikely to have a recurrence although they couldn’t say a hundred percent as you can get a reoccurrence on the scar.

 

So I went ahead and had that done in another hospital which wasn’t geared up to the breast cancer care. And it wasn’t a very pleasant experience at that time because of poorer pain control. However, I overcome that, I made a complaint about it and that was dealt with because I didn’t want other women to have that problem.

 

And I felt much, much better, there was no cancer in this, in the other breast or anything wrong, but I was pleased not to have that weight and to be lop-sided And I was looking forward to having a nice bra at the size I wanted to be, which was not as big as I was naturally. So it was, I was quite positive about that.

 

And I’ve been fine, I’ve no problems about how I look, I don’t mind who sees me with breasts or without now, although I do realise that there are a lot of women, especially younger women, who would need to be looking more carefully about mastectomy and maybe only having, only have a partial mastectomy.

 

I suppose because of my age I am a realist and the thought of having cancer again in another breast was enough for me to make the decision I’m sorry I can’t go through another four years waiting.

 

And the other thing that I didn’t like, well I still don’t actually, was having to go back every six months. I know that they have to do it, and it’s the right thing, but you know your heart is in your mouth. So really you’re never, it’s never free from your mind. You can, you try but it isn’t free from your mind. I know that I can get breast cancer on the scars, and I know that I could get cancer in the other parts of the body which wouldn’t be connected to the cancer I had. And that’s a lot more information than I ever had at the beginning. And yet I thought I knew a lot about breast cancer.

Patricia had another mammogram and a core biopsy, and was glad the results were given on the same day.

I went away on holiday and came back and there was a letter waiting for me asking me to go back to the main hospital because they may need to have another look at the x-rays, giving the details of what it could possibly be. And again I was quite positive about it and I went along to the main hospital not really knowing what to expect, just that I would probably have another mammogram. I had another mammogram and they asked me to sit for a while and wait. There was a lot of other people coming in and out who were having similar things and everything was fine. So I was quite happy.

 

What did the letter say, can you remember?

 

It just said that “you need to come back and have another mammogram,” and then it explained that this could be any, why, and that’s what I did.

 

You didn’t worry at this stage?

 

Not at all, no, no. I had no worries at all. Breast cancer hadn’t been in the family, and everybody else had had cancer of different types in both sides of the family, but that wasn’t one of them, so no I had no worries at all.

 

So you had the second mammogram, did you ask them any questions or was it all quite straight forward?

 

Well it was quite straight forward. I was a little nervous and when they wanted to do the needle biopsy, that was what worried me. And I thought it’ll be all right, it’ll be benign or something. Not thinking very much about it at all.

 

No. And what did the needle biopsy involve?

 

Well I had to have my breast clamped. But this, and that was very painful and it was a needle that, I mean very kind and explained that it had to go in to the site where they thought there was a problem. And it was the first time it went in, he wasn’t happy and they had to go in again. So that was a bit distressing really. And I had to have a bit of a you know wait around at that point, it was distressing I have to say, but I have to say that’s what needed to be done. I think if I’d have been told what was going to happen I probably wouldn’t, I’d have been even more nervous, but it had to be done and that was that.

 

And they did the core biopsy, did they give you the results there and then on the same day?

 

Yes. And I saw the consultant on the same day. And the breast cancer nurse, it all happened within I would say half an hour or three quarters of an hour.

 

Very quickly then?

 

Yes. Yes, which was wonderful.

Patricia was keen to be screened at 50 but lives in a rural area and didn't have her first mammogram until 53.

I would say in about 1997 there was a lump on my breast, I could see it and I went to the GP about that and he had a look at it and he said there was nothing to worry about. And that he could actually remove it, you know, nothing to be concerned about, so, and I wasn’t concerned about it I suppose. And that was fine, sorted out.

 

I knew that when I was 50 I would be able to go and have a mammogram. And when I was 50 I contacted the Local Health Authority and they said that I was too late because of where I lived in a rural area. They only had, they only came out every three years then, so I would have to wait till I was 53. Which I did do, and it was in August 1999 that I had a letter to say would I go to [place name].

Patricia was in hospital for ten days after her mastectomy because she had a build-up of fluid under her arm. Later, she had more fluid drained at the local surgery.

No problems in the hospital. When they took the bandage off I could see the scar and everything. What I wasn’t comfortable with was the fluid build up especially under the arm. And it was quite painful, and also where the drain went in to the centre, where the nipple had been, there was quite a bit of pain there and it wasn’t pleasant.

 

I would say I was in hospital for ten days and the reason being that the fluid wasn’t going down enough and they weren’t prepared to let me out until the fluid had gone to a certain level, but did explain that I may have to come back again because of the fluid up.

 

And it was painful, what I wasn’t expecting was the pain that I really did have when they took the drain out where the nipple part was. In fact I nearly fainted with it and I thought I had a good pain threshold, it was awful. But it was done and then they took the other drain out, which was no problem at all.

 

And there was a little bit of fluid and everything seemed fine, and as I say I’d had all the information and I’d managed to, you know, ask the questions I thought were relevant. The fact that cancer was there and it had gone, that was all I was concerned about.

 

However when I did go home there was a further build up of fluid and I was very lucky that at my local GP practice there was somebody there who could take the fluid away. And it was a couple of times I’d had it done and it was painful. But as I say, as it went down I felt fine.

Patricia found her prosthesis heavy and uncomfortable and prefers wearing a swim prosthesis.

I went to get, visit for prosthesis and I realised that the prosthesis when I did get it was very, very heavy. Because I had big breasts of course and then there was getting the bras and things like this, and I managed to find a very good mail order to get some of these pretty ones from, which made it all much better.

 

I went back to work and one of the first things I realised was how uncomfortable it was because part of my job was to rush around a lot. And I found the prosthesis was heavy but it was also, especially in the hot weather, it was uncomfortable, I was sweating.

 

So I actually got in touch with the mail order catalogue and I realised that there was another prosthesis you could buy which was really more for swimming. But it did have a heavy piece in the middle and I, so I invested in one of those which was quite cheap. And I found that much better, I didn’t have the weight on my arm and I got quite a few so I could change them regularly, although there was still this sweating bit.

Patricia talked to her breast care nurse because she was worried she'd had a mastectomy unnecessarily. She was reassured by the nurse and after reading her pathology report.

In the end I found that I couldn’t do this very, very hard job I had as well, and so I actually went out on ill health. And it was only then that I started to question what sort of cancer I’d had and I joined an organisation that assisted me with that information.

 

I was told that I had a cancer that was in the duct and that because it was in the duct, it was really a cancer that wouldn’t have spread anywhere. And it was, I’d got, it was got in time anyway and nothing to worry about, and I was very unlikely to ever get cancer in the breast again. Although there was a lot of calcification around the outside of the breast as well, but at the time I had the breast cancer I never questioned any of it.

 

I rang the breast cancer nurse and asked if she had any information on the sort of cancer I had and she did. It was just an A4 size paper and in this it did say that it was a ductal cancer, it didn’t spread and there was no problems with it, and you know, basically that’s what it was.

 

So I started to think oh well perhaps I’ve overreacted here about the cancer. I actually thought oh I feel stupid now because you know I didn’t know. And so I am worried about it, but then I got a bit more information off the Internet and decided that I would ask a few more questions and so I rang the breast cancer nurse again, it was a different one but they were all very helpful. And I asked if I could possibly have a bit more information. The pathology report, which was something I’d never asked for. My GP had just had one letter really and it didn’t give him very much information. Because he said to me “Oh they’ve caught it early, that’s great,” you see.

 

And when I got the pathology report I was able to look at it in a different light because it actually gave me a grade number which rung bells right away, that this wasn’t quite as a non-spreadable cancer as I thought. And so because of that I rung the health, the breast cancer nurse back, and she’d already given me a little bit of information. But she did say I could ring her again if I wanted more. And so we did have a good discussion about it.

 

And really I realised that actually I don’t think that they know a lot about this, well I know they don’t know a lot about this cancer. And so really I suppose they’re not supposed, I suppose they wouldn’t want to distress us anymore or distress me anymore by at that time not giving me this information. However I think perhaps I may have looked at the whole issue a little differently had I had it. And I’m very lucky to have a pathology report because my GP doesn’t have a pathology report.