Ductal Carcinoma in Situ (DCIS)

Mastectomy for DCIS: pathology results

A few weeks after surgery, the women we spoke with had an outpatient’s appointment with the doctor, who checked that the breast was healing well and talked to them about their pathology results. Waiting for these results was often a difficult time but most women were pleased and relieved to be told they were clear and would need no further treatment. A few said they needed radiotherapy or hormone therapy (see Radiotherapy and our Breast Cancer information). Some women who had lymph nodes removed were relieved to hear that these were clear and they’d had no invasive breast cancer.

Two women said that, when they got their pathology results, less DCIS was found than doctors first suspected. This made them question whether they could have been treated by wide local excision instead of a mastectomy. A few said that, as well as DCIS, some invasive breast cancer cells had also been removed. One woman said she was told that, as well as DCIS, she’d had Paget’s disease (a rare cancer affecting the nipple).

Ann sometimes wonders if she really needed a mastectomy. She tells herself there's no point in...

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Age at interview: 58

Sex: Female

Age at diagnosis: 56

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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.

Eileen had several appointments to discuss her pathology results because, after surgery, doctors...

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Age at interview: 62

Sex: Female

Age at diagnosis: 60

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After the surgery, when they had removed my breast tissue and lymph nodes, they were going to give me the results the week after surgery, or the week after I came out of hospital, and I had an appointment fixed, and it was cancelled. I had two subsequent appointments cancelled, to see the surgeon, because they still didn't have the results, and they weren't telling me why they didn't have the results. Of course I was frantic.

And then finally I went with my sister, and the surgeon said he was embarrassed because they still didn't have the results. We said, why, and he said they can't find what they're looking for. Even though they've done, now, considerably more analysis than they ever would. And I said what are they looking for, and he said DCIS, and they couldn't find any DCIS. They couldn't find any DCIS in my breast that they had removed. I subsequently had two, possibly three, quite long sessions with the pathologist, looking at my own cells under the microscope, trying to understand why it was that they said they'd found DCIS in the original biopsy, and not being able to find any DCIS in the breast they removed.

I'm still not really a hundred percent sure that I understood it, but I can't think of any other explanation than they removed from my breast in the biopsy the only DCIS cells there were in my whole breast. They were two tiny spots of less than one millimetre. And I had my whole breast and five lymph nodes removed for that. Which is why I'm deeply concerned about being faced with this white spots diagnosis on my other breast, when even when I was diagnosed with threatening, high grade, wide extensive DCIS, in the end, when they removed my breast, they couldn't find it at all.

Many women, including those who’d had breast reconstruction, also talked about their changed body image and life after DCIS.

Last reviewed July 2017.