Ductal Carcinoma in Situ (DCIS)

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.

I went back to the surgeon. And he said, “It is, this is DCIS.” And he spent ages with me. I was very impressed. I had a load of questions by then. And he went through them. And he drew me diagrams of where the DCIS was. And it was clear at that stage that we were probably talking about a mastectomy because the DCIS was, as he called it, at ten o’clock and two o’clock. And said, “Look we really can’t take this out because it’s going be, you know, your breast could fall off [laughs] because it has so many holes in it.” So I knew we were talking about a mastectomy.

 

But I also realised at that stage, because of what he had said, that it was highly likely that was all we were talking about, that we weren’t talking about chemotherapy or radiotherapy or tamoxifen or anything. It could be quite likely that I wouldn’t have to have any of that. And that was hugely helpful because that reassured me straightaway. Because I think, in common with a lot of other people, the thought of all those sort of therapies is the thing that is truly terrifying really. I know women often have huge issues with losing a breast. But I just didn’t. I never did. My immediate reaction was, if there’s a problem with it, just take it away, that’s fine, I’ll, I can live with it.

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.

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.

They said the first one, they said they found cancer in this one. And then in the right hand one now they found, well I call them sparks. It’s just tiny, tiny little bit of stuff, maybe a pinhead. And it was just like to me sparks coming off it. And they found that and then I had to come back another two weeks because I had to lie down on the table for them to put some needle in.

 

But, as I said, once they’re doing something to help you, you have the patience. You just get on with it while they do the work, you’re like, you do, if they say move here you move there. You just do it because they are here to help you, they’re here to find out what’s wrong.

 

In the end they found what they wanted to find. And then I had to go and have a scan because they wasn’t so sure how far the cancer in this one had gone. So I went on to have a scan and they found what they wanted and then I went back and they explained to me what it was. They did find really cancer in this one, it was one of those ones, it wasn’t a lump, it was a spider. And I didn’t know that, all I keep hearing is women should check her breast for lumps. Nobody said there was another version of it because during this time I wasn’t sick. I didn’t feel any pain. I felt nothing. So I didn’t know there was anything wrong with me until, you know.

 

When they gave you the diagnosis, first did they tell you there was breast cancer in the right breast? And did they say there was DCIS in the left at the same time or different?

 

Yeah, at the same time. At the same time. Because that’s when the specialist, we went to see the specialist and they told us what it was.

 

So did, when they said on the left side there is DCIS, had you ever heard of this?

 

I had never heard of it, I didn’t know what it was. Didn’t know until he explained to me that it’s, what did he say it was? He said it wasn’t cancer but it could, maybe in the future it could turn cancerous or it could not. So the best thing that they could do is just take it out. So I said just go ahead. You know and just scoop it out and just make my breasts bigger [laughs].

So did they do a mastectomy on the left breast or did they just take out the bits that needed to be taken out?

 

No, they took, they did a mastectomy on both of them. Both of my breasts I had a mastectomy.

 

Yeah. And when they told you about the surgery, did they suggest that you should have a mastectomy on both breasts or did they say there was any other surgery possible?

 

No, they said that they were going to do a mastectomy because when I went there first and I did say to the nurse that, if anything, I’d rather just have everything scooped out instead of them taking a bit of this and a bit of that, I just want to get everything scooped out and then just rebuild. And that’s what they did. They just scoop everything out. Because the doctor told me that they were going to do a mastectomy in both breasts at the same time. And then reconstruct it at the same time. So that’s what they did for me, which I thought was really good. Excellent.

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.

She [doctor] did warn me that, if the calcifications were what they call high-grade, there’s three grades, low, medium and high, that there would be a possibility of a mastectomy. Well I couldn’t understand this because you hear of people who have had a lump removed, but haven’t had their breast removed, and I’m thinking, “Well, if this is pre-cancerous, why am I having this mastectomy?” But of course she didn’t know at this stage whether I would be high or low or medium grade. So it was about a week later actually that she came to see me, and I could tell by the look on her face that all wasn’t well, and she sat down and said, “I’m really sorry but they are high grade and the only thing we can offer you is a mastectomy.” And I could not believe this, I thought well, this is crazy, it was like an out of body experience, she wasn’t speaking to me, she was speaking to somebody else, this can’t be happening to me, you know.

 

So she sat there and I said, “Well surely there’s got to be an alternative.” But again it was all taken out of my hands; I had no control of what was going to happen to me. All she kept pushing for and I’ve realised afterwards, why she was, or why they were saying this, that I had to have a mastectomy, that there was no option.

 

She did sort of mention in passing that if I was totally against this, then they would possibly give me an intense course of radiation, but they couldn’t be 100% certain that they would get, or kill everything off. So really I had no choice, and this seemed crazy to me, absolutely seemed crazy. So I just said well okay, there and then. She did say of course, “You know talk with your husband and your family,” of course my husband just said, “Well get rid, get rid right away.” You know, and then that’s it as far as he was concerned.

 

About two weeks later I think it was, I went to see the specialist. My husband came with me. Again he was behind a curtain and I wanted him to be very much involved because you can only take so much in, of what they’re telling you, and I had to, I felt that I had no choice but to go along with whatever he was saying. I just wasn’t given this choice. I realised that he was telling me that if he didn’t take everything away then he couldn’t be 100% certain that everything had gone and there could be more calcifications that he hadn’t found. It just seemed so extreme at the time. So extreme. I just went along with it. To be honest I was numb really. That was all I could think was well I’ve got to have this, you know, there’s no choice, I’ve no choice.

The other shocking thing was that he told me, and this is very significant in the DCIS diagnosis, was that because it was, the white spots that they had found were over an area of five centimetres – was it five centimetres, yes, no they were four centimetres, that's right, four centimetres – it was just too big to be able to cut out enough tissue to remove it all safely, so they would have to remove my whole breast. Well this was a profound shock, because all the information and literature I had ever seen which had encouraged me obediently to go every three years for my mammogram, the screening program, was catch it early, and you'll have less surgery, less treatment. And this was the exact opposite. Not only was it catching it early – like a small lump – but I didn't even have a lump. I didn't have any symptoms whatsoever, nothing. I felt fit and fine, until this diagnosis, and I've felt ill ever since. And this is the opposite, it seems to me, of what medical intervention should be about.

 

So I've been, ever since then I've felt there's something not quite right about the way in which we're dealing with DCIS, particularly as it is diagnosed in the screening program. If somebody's gone to the screening with no symptoms whatsoever, this is a profound shock. I have discovered subsequently that almost half the people that are diagnosed with DCIS do have some other form of breast symptom, whether it's found through a screening program or they've taken themselves to the doctor, doesn't really matter. Sometimes the symptom they've got has no connection with the DCIS, sometimes it looks like there may be a connection. But at least half the people who are diagnosed with DCIS would never have previously been diagnosed, except through the screening program.

 

So it does raise questions about whether it's really a good thing, because what I discovered, I'm jumping around here, but after I got the diagnosis I went away and rushed around trying to understand about this strange DCIS, to discover that in the medical world it wasn't free from controversy about what to do about it, because it's thought that some, maybe a lot of DCIS, never develops into breast cancer proper anyway. And so the shock of having a mastectomy proposed for some early form of breast cancer, that might not even develop into breast cancer anyway, was just adding to it all.

The day that we received the results, I was told that I had DCIS and they explained very briefly what it was. That technically it was pre-cancerous which was a relief and in the next breath they said “So we’re going to offer you a mastectomy,” and that was appalling. Because you assume that if something was pre-cancerous, they can do what I believe they do with cervical cancer and you know just zap those cells.

 

And I must say the bottom of my world dropped out at that moment, so that was a very difficult moment, from having a month earlier felt completely clear of any risk at all to being offered a mastectomy for something that wasn’t even truly invasive cancer as far as they knew.

 

And in that fortnight I did a lot of research too on the Web about the condition and realised that it wasn’t cut and dried, that some people were beginning to ask whether surgery was necessary always but that the evidence wasn’t there, no one could actually answer my questions, even when I went back for the subsequent appointment I had loads and loads of questions but they could not be answered.

 

And that made it even more appalling to think I was going to have a mastectomy when I couldn’t make a clear choice because the answers that I needed - about how long would it take for this to develop, how dangerous are these cells, what is exactly the spread in my breast - none of those could be answered. They could only say “We have found what we’ve found, there may be more but we can’t tell until we’ve removed your breast and we can’t tell whether it’s invasive until we’ve removed your breast.” And that’s appalling and in fact I refused at that point to go ahead. I felt I’d been well railroaded into a surgical procedure and so I said I would wait. Which I don’t think was approved of really, I felt a bit alienated then because people don’t step off the tracks and I said that I would.

 

So at that point I said that I thought I needed thinking time and sort of set myself a target of getting to Christmas and beyond because that would have given me three or four months to do some more research to think things through to see if I could put my faith in any complementary strategies, to talk to people. And to see a counsellor because I felt absolutely floored by the diagnosis and I thought if I went into and prepared myself mentally then I could, because at that time I was talking about this in terms of, I was talking about mastectomy in terms of a mutilation and I couldn’t see it as, I objected to it being called a treatment, to me it wasn’t a treatment, it was almost the opposite.

 

Yes. It is quite a shock to patients isn’t it, that you can have something where everybody says your future outlook, your prognosis, is ever so good; your survival should be very good, but then in the next sentence suggest that you need a breast removed to achieve that.

 

And even for, if we call them “ordinary cancers,” in other words invasive cancers, the type of surgery or the extent of surgery that is done is not related to how aggressive the cancer is. It is related to its width. And again, in very straightforward terms, what the surgery is trying to do is to remove everything that’s cancerous. So if that area that is cancerous is a narrow piece, then taking a piece of the breast will be adequate. If the cancer change in your breast extends over a wide area, then removing a piece won’t achieve removal of all the cancer, nor will it allow afterwards a good cosmetic outcome for the patient because so much of it would have been removed that the breast wouldn’t look right.

 

So people can still have a wonderful outlook and survival in the future but need a mastectomy now because their cancer is wider than a piece or wide excision, as it’s called, would allow.

 

 

The mastectomy, as we were mentioning earlier, is to solve the straightforward question that any patient would say, “I’ve had my operation, have you removed everything that was wrong within the breast?” And if you can do that by taking a piece of the breast, conservation surgery as it’s called, then you’ve achieved your goal. But if it’s over a wide area, then you need to remove all of the area that’s abnormal and that may mean a mastectomy. And there isn’t a way around that, you can’t, if you like, just take part of the area that’s wrong and reassure patients that that’s been enough. Because it won’t be of benefit to them.

 

So the mastectomy, the surgical option is based very much on the width of the tumour. The over treatment therefore as in how a patient balances the loss of their breast compared to the worry, would they develop cancer in the future that would shorten their life, is ever so difficult, because none of us really can say from one patient how they’re going to progress or what’s going to happen to them over time. Everyone varies slightly and it’s a very good question, it’s the crystal ball saying, “What’s going to happen to me in the future?” And none of us have the ability to be able to predict that.

 

 

Yes, if we again take that from it’s start in the sense that we are presuming that that lady has only DCIS to begin with, and therefore we assume that the picture we have on the x-ray is giving us the full information, which it will in many instances, but there maybe some of those patients who already have some invasion and therefore already have some invasive cancer. So we are categorising them all the same from the start, without being able to say for certain that that is the case.

 

The role for anti-hormonal tablet treatment, the best of which or the most well known of which is tamoxifen, is usually when you’ve had the abnormal area removed, and you’re trying to prevent a further cancer occurrence in that breast or even a brand new one happening in the opposite breast in the future. There isn’t a great deal of information that if you treat the DCIS in the breast without any operation and just give the patient tamoxifen, as to how effective that will be, and the problem for the patient is they want you to be able to do something just at the moment when they think something’s gone wrong. So at the moment that things are becoming invasive is when they’d want you to do more. And we have no way of measuring that, you would have to wait for example till they develop a lump or a mass on the x-ray, at that stage say you now have an invasive cancer and therefore you do need more done. And they may still do very well in the future, but their outcome would be slightly less favourable because they’ve now developed a lump and they may feel they’ve missed a great chance at an earlier stage of having it cured with treatment.

And a lot of women also wondered why the different, in different hospitals women seemed to get treated in different ways for DCIS.

I suppose part of that is how people present, and every patient is different. And sometimes ladies will say, “I didn’t quite have that treatment, but this lady had a different treatment,” and that’s how it should be because I know there are a number of ways of treating somebody, many of which would be effective for different reasons. And the treatment the patient gets should be specific for them; it should be for the problem that they’ve come with. Much like we said earlier, some patients would have a small piece of the breast removed, others would have a mastectomy with a reconstruction because it was over a wider area.

So every lady’s treatment will differ, be it DCIS or be it invasive cancer. Now it is true that people then look on things differently from a clinician point of view and, as we said earlier, when you have a situation where the evidence isn’t cast iron that an extra treatment of radiotherapy or tamoxifen is always of use. And people have different beliefs as regards to the benefits that patients get, so there will be some variation.

 And have you come across many women who didn’t want to have any treatment at all?

Very few actually, in essence, and we often say to patients that, for example when a lady goes to a breast screening unit for her mammogram, most will go in the belief that they’re going to be told that everything’s alright. They don’t go really thinking that this process may well find something that’s severe. They’ll think about it when the question’s asked, but the normal way of things to go is to be told they’re alright, it’s not part of the plan to be told that maybe things aren’t alright.  And therefore patients when they come usually feel that something’s been found and it needs to be dealt with. Now they have the information, the diagnosis, it’s very difficult then not to do something about it. If they didn’t know, they would be alright. But once they know, they find it very difficult to ignore.

I went back and it was very much a case of, you could, it was very much a case of you have to make a choice here. You know, what we found and we found DCIS, we haven't, there were no clear margins so we have two choices. You can either have another operation to see if we can get some clear margins or you can have a mastectomy, just like that.

 

And that was the hardest thing for me because I didn't really, I couldn't make that decision. I found that really, you know, you have to decide if you're going to have your breast cut off. You know, it was a very difficult thing, and I don't think there’s any other way to say it, so I wouldn't say that they were at fault for saying that but it's, I think because it wasn't breast cancer it would have been an elective mastectomy so they were only in a position which they could say it's up to you. And that was a very difficult decision to make.

 

And so I went home and, after talking to friends and just working it through, I decided I'd go for second operation rather than the mastectomy. Which in hindsight, well I don't know if that was a good idea or not [laughs].

 

I did a lot of reading around it as well, so I understood very much what's happening to me. And again I also had, I also used the Breast Cancer Care website to get information from other women and also to take part in their peer support. And so that was a really, really good thing for me because again I had to make decisions about having a mastectomy and things and it was at that point that I did that. And somebody phoned me up who had been diagnosed with DCIS and it was twenty years ago and it had been left and they hadn't done anything about it. And then she had developed a tumour about six years down the line and then had had a mastectomy. And luckily she was fine but she had to go through chemotherapy and all of that because it had become quite aggressive very quickly which helped me make a decision very quickly actually [laughs] about what was happening to me.

 

So I had the second operation and I came in and I recovered from that, and then two weeks later I went back in and was told that there were no clear margins and that I would have to have a mastectomy. And that was the way forward.

After you had the first surgery, later you then went back for another appointment and that’s when they said, the DCIS was more widespread and they would need to do a mastectomy, is that right?

 

That’s the case yes, I’d gone back two weeks after, sorry not two weeks after surgery, it must’ve, yes it was, I beg your pardon it was two weeks after surgery. It was going to be ten days after surgery, but I think they had a problem with the surgeon getting to see me. And obviously she likes to tell you, but she did the surgery and she knows exactly what she found, I went there, it was quite an anxious time but in a positive way, and I look at things on the utmost negative side but in a positive way, and I hope that sounds as though you can understand that. Its just that if I know the extreme of what she’s going to tell me and I can deal with that, because I’ve already researched what it could be, and so when she does finally tell me. And so I was prepared, and which is why I was called in, and I knew, I do feel that sometimes it gives you that opportunity to know before you’ve even been told, but to give you an opportunity to think, “Oh my word, what are they going to say to you?” And there was two other nurses that came in with her when she’d come in to check my wound, and then she went out again and she came in with two other nurses, and I knew that they weren’t there just to be trained or anything. I knew that they were there because she was going to tell me something, but I was prepared.

 

And that’s why I dealt with it, and she said that basically, her first words were that she has managed to find, there’s at least 31mm and not 6mm that they’d showed on the mammogram and the ultrasound and, to be honest in her opinion it would be better to have a mastectomy now. It wasn’t something that she said I had to have, but she said considering in the areas and she could actually, I could have another lumpectomy if I wanted to, but I could actually be going backwards and forwards for surgery for quite some time, if they don’t get it all out. And to be honest I didn’t really want to do that, and because I’d researched how DCIS progresses and what it can become, I really don’t see the point of putting anyone else through that, wasting people’s time and money and my health really, in sort of going backwards and forwards and trying to get rid of it. Because I know how the body works and I know that it’s probably the best thing for me because it’s high grade DCIS, they’ve recommended it, and if they’ve recommended it then, you know, and I’ve researched it, it’s good enough for me. And I’m happy with that.