Feelings about having a wide local excision for DCIS

Currently, women with DCIS are either treated by wide local excision (WLE) or mastectomy. Wide local excision (sometimes called lumpectomy) involves the surgical removal of the affected breast tissue, together with an area (margin) of normal breast tissue around it, to ensure that all affected tissue is removed. WLE is an example of breast-conserving surgery – only the area of DCIS is removed, rather than the whole breast. Mastectomy involves removal of the whole breast and is usually recommended if the DCIS affects a large area of the breast, if it has not been possible to get a clear area of normal tissue around the DCIS by wide local excision, or if there is more than one area of DCIS. The treatment offered depends on factors such as the extent of DCIS and the grade.
Many women said that their doctor recommended a WLE because the area of DCIS was small. Though shocked at the diagnosis, which was unexpected, most were pleased or relieved to have a WLE instead of a mastectomy, some saying they felt ‘lucky the DCIS had been caught early’.

Sue felt positive about having a wide local excision because of what her doctor had told her and…

Age at interview 50

Gender Female

Age at diagnosis 49

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Did he say you’ve got a choice in terms of treatments?

He did. He said depending on how much was infected from the MRI, there would be a choice of a wide local incision or the mastectomy. And depending on what the MRI showed up, they would then discuss the treatments with me further, when I went back.

And when you went back, what did he say?

He said the MRI had shown that only part of the breast was infected. And it only needed a wide local incision to get rid of the infected part. It didn’t need a full mastectomy.

Yeah. And how were you feeling at this stage overall because you’d had days where you couldn’t sleep?

At that time I was still feeling, I was then feeling quite positive because I’d obviously read lots more on the websites about people that had had this wide local incision and hadn’t had to have treatment after it. And had just been able to get on with life, like I am now.

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One woman, whose mother had a mastectomy in the past, felt reassured that she would not have to lose her breast. Another, whose father had had breast cancer, was worried that she might need a second operation if it wasn’t all removed or if it recurred. She asked the doctor whether it would be better for her to have a mastectomy instead of a WLE. Another woman was offered the choice of a WLE or a double mastectomy to prevent problems in future because of her family history of breast cancer. She felt shocked by this choice and decided on a WLE because a she felt a mastectomy would have been too ‘drastic’.

Carols doctor reassured her that a mastectomy was unnecessary for the small area of DCIS she had.

Age at interview 51

Gender Female

Age at diagnosis 51

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When I went for the results and they told me it was DCIS, it was low to intermediate grade DCIS but it was quite a small area. And at that point, because that news is sinking in, they then start to talk to you about treatment. And although I’m usually quite chatty, I went sort of unable to speak really. And all the questions I was being asked and the treatment I was being offered, I couldn’t make choices. I was so confused with the whole thing. And it was like, well I don’t know what I want to have done, you know.

When I was told I’d got low to intermediate DCIS, my first question, because of my father having had cancer, was should I just have a mastectomy. And the surgeon said it’s not necessary at this stage. And I went back to that during that session and said, Are you sure I shouldn’t have a mastectomy because I’d rather it all just be gone and out of me than have this WLE, have that analysed, find out there’s something else wrong and then have to come back for further surgery. I’d rather get it over and done with And thinking back, I mean, I wouldn’t, there’s no way I wanted a mastectomy but it was the unknown quantity. It was, if there’s anything else wrong, can I face further surgery? I just want it over and done with. But the surgeon, as I said, he’d queried the results in the first place, I trusted him implicitly and he said, Not necessary at this stage So I went with his advice.

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After talking to the nurse and doing her own research, Agnes chose a wide local excision. She…

Age at interview 54

Gender Female

Age at diagnosis 53

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So I went to [the hospital] the day after. And was told that I’ve got two options, either a lumpectomy and after-treatment of different sorts, or a double mastectomy due to the family history, which I found a bit shocking. Well not just a bit, very shocking [laughs]. Luckily I was introduced to a very helpful and warm person, my Macmillan nurse called [nurse’s name]. And she gave us a lot of free information to take home. And she said I can have a few days to think about which option I go for. I was told at the time that I’d probably have to be on tamoxifen for five years afterwards, and radiotherapy for a few months after the operation, whichever optionI’m choosing.

We had about a week to think about it at home. And then we went back to see [the Macmillian nurse] and I told her that I would opt for the lumpectomy. And she looked very happy about it as well [laughs]. A much less drastic procedure than double mastectomy would be. My date was decided, operation date was decided to be sort of early mid March.

I had all the leaflets in a sort of compact kit given by the Macmillan nurse. And reading through it, reading through the Internet, reading through the books at home, I decided that I will go for the smaller operation because the double mastectomy seemed so drastic considering that it wasn’t even a proper cancer so to speak. I just couldn’t face the enormity of the other going in withfull blazing guns [laughs], at something that didn’t seem that life threatening at the time. Because I was told it was non-invasive.

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Some women felt they weren’t given a choice about treatment. They said they went along with the doctor’s recommendation and never realised there was a choice. One woman, who was caring for her elderly mother, said she preferred to have a WLE because the recovery would be quicker. Two women had a WLE to determine the diagnosis because their biopsy result had been inconclusive. Neither had heard of DCIS before and one said she was asked to take part in a clinical trial about DCIS treatment.

Hazel declined to take part in a trial because she didnt have the information she needed. She…

Age at interview 69

Gender Female

Age at diagnosis 57

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He then said, well, there was a trial investigating the management of this condition I didn’t know then but I quickly found that one in five women who are diagnosed with cancer have this wretched borderline condition of ductal carcinoma in situ. So it’s not an insignificant number. If they have 10,000 women with cancer a year, they’re going to have 2,000 whove got this peculiar thing. And furthermore, this isn’t one thing, it’s many things. it’s got sub-sections, some of which are more, how can I say? they’re going to be, cause you more trouble. Others, well if you hadn’t known about it, you’d have gone to your grave not knowing you had it and so they’re not going to cause you any problem at all. So there’s a huge range of possibilities with DCIS which, again, is not conveyed in the literature but which I found out in the 2 weeks that I was given to go away and think about whether I was going to say yes or no to the trial.

Again, when I went into overdrive to speak to medical friends I knew to say, hey, what is this thing But the shock of feeling so ill-prepared to make a decision and realising at that moment that you couldn’t make a decision because, what had you got to make a decision on? Precious little. And then going away to find out what you could in the fortnight that you’d been given, to realise that then that there were all sorts of things you didn’t know, like, what about the particulars of your own case? You hadn’t been told those. I didn’t know how big it was, I didn’t know how big the margins were, which is very crucial in ductal carcinoma in situ. I have to confess I had to work out what a margin was because it’s not immediately apparent to you that they chop out a lump and where is the nasty bit in the middle of that lump? So margins are very significant. How big was it? Was I oestrogen receptor positive or negative?

The 4 choices in the trial and the trial was to look at the management of this condition to prevent recurrence, didn’t even look at survival. And I can assure you that if you’ve just been told you’ve got carcinoma, the thing that pops into your head quick as a flash is, oops [laughing] how long have I got, you know? So, it was purely to look at the management, purely to see what to do when you’ve got this condition. What did you ask me? I’ve forgotten.

What did they want to do?

What did they want to do? Ah yes, that’s right, and I’ve gone back to the trial because this is what they wanted to do. They wanted to say, will you join the trial So, obviously if I’d said yes, it would have been the trial. If I’d said no, they would presumably have, I don’t know what? What do you do if you don’t know the management of something? I mean, again, huge conundrum. If they don’t know, and they’ve just told you they don’t know, what are they going to do if you say you don’t want to join the trial because it doesn’t make sense, really, does it?

So you’re in as much of a pickle whether you do join the trial or whether you don’t. And the trial options were’ nothing further; a full course of tamoxifen, 5 years; a full course of radiotherapy or tamoxifen and radiotherapy. Now, that to me seemed a very bizarre choice. The first thing that flashed into my head, bearing in mind that at that time I was as ignorant as the rest of them, I thought, well do they know how serious this thing is or don’t they? I mean, if they’re offering me nothing further compared with the whole works, how serious is this? Do they know how serious it is?

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Mastectomy for DCIS: the operation

Most women had surgery shortly after being diagnosed and found this reassuring because they wanted treatment as soon as possible. Some, though, said they would...