Pathology from lumpectomy - not what I was expecting

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marycal
marycal Member Posts: 61
edited May 2017 in DCIS (Ductal Carcinoma In Situ)

Hi all -

I haven't spoken to my surgeon yet, but she left me a message. Had a lumpectomy this past Tues, and path report came back today. It turns out that the IDC is 11mm (much smaller than they had thought). She got clear margins, but only by 1mm. Shouldn't it be wider?

The DCIS however, was 3cm (way bigger than they had thought), and the margins were positive.

The good news is my nodes were clear.

I'm 47 yrs old, and my surgeon said because I'm young and the DCIS was extensive (and margins weren't clear), I should consider a mastectomy. I had finally gotten to a place of decision on this before, and I really didn't want to have to go down that route. But it looks like I might have to now.

Is there any point in going back in and trying to get clear margins? Or even if they get clear margins, it's likely that there is more DCIS in the breast?

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  • candles1
    candles1 Member Posts: 77
    edited May 2017

    Marycal, did you have an MRI and did that provide any guidance as to the nonexistence of any abnormalities elsewhere?

    Personally, I followed the recommendation of my doctors, which was to proceed with BMX when margins were unclear. I have been very happy with my decision

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  • marycal
    marycal Member Posts: 61
    edited May 2017

    candles1 - yes, I did get an mri that found another lump (which turned out benign. Had it taken out, just in case), but nothing else. But the mri also showed malignant tumor to be a total of 1.5 cm, which in fact was 11mm of invasive plus 3cm+ of DCIS. So I'm not feeling super confident in mri at the moment.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited May 2017

    I don't know marykal...i had 4 cm of dcis and still had a lumpectomy...

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  • Annette47
    Annette47 Member Posts: 957
    edited May 2017

    Honestly, it could go either way, and especially since yours isn't picked up well by MRI, there's really no way to know in advance. I know plenty of people who've gone in for re-excision and achieved clear margins (in some cases after 3 tries), but others who tried and were unable to and ended up with a mastectomy anyway and subsequently found out the DCIS was pretty much everywhere throughout their breast.

    Part of whether it’s worth trying probably depends on the size of your breast - the bigger the breast, the more that can be taken out without significant deformation, but at a certain point, it may be just too much. And as to your question about clear margins and some DCIS remaining, yes, it can happen as DCIS is known to “skip” along sections of the duct, but not all DCIS behaves that way. To the best of my knowledge, what was removed in my surgery 4.5 years ago was all that was there ...

    I think it would mostly depend on your tolerance for the surgery - if it's important to you to try, and you feel you can tolerate multiple surgeries (the re-excision and then a later mastectomy if it doesn't work) then you can go for it. If you'd rather not face the possibility of going under more than one more time, then go right to mastectomy. Best of luck either way - it sounds like a tough position to be in, and honestly I don't know what I would do if I was in your shoes.

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  • marycal
    marycal Member Posts: 61
    edited May 2017

    Tresjoli2 - did they get it all out the first time?

    Annette47 - thank you for your thoughts on the matter. I have pretty small breasts (small B at most, but more like an A). So I know that from that standpoint it maybe makes more sense to just get all the tissue out, but it's the reconstruction part of the mastectomy that I just can't get comfortable with. And I'm not ready to be flat. Anyway, that is very interesting about DCIS being known to skip along sections. The lack of a crystal ball has never been more frustrating.

    Maybe if anyone else reads this, I can hear from ladies who have gone back in and re-excised.

    Thank you!!

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited May 2017

    Marycal,

    You will need to speak to your BS and especially a PS but before you go in/decide - be brutally honest in your questions so they get what you are really wanting as end result - at a size A/B breast getting 3 cm out with good margins - which are mm - it's going to leave you with a sizeable defect and a very uneven breast.

    If it possible to have a nipple sparing mastectomy - having a mastectomy and TE in place might give you a better cosmetic result.

    It depends a bit on what quadrant this DCIS is in. Also keeps in mind that small DCIS in other parts of the breast- mm of change may be missed by MRI/scans. Please ask about this as well.

    Best making your choices 😊

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  • marycal
    marycal Member Posts: 61
    edited May 2017

    Thanks Wildplaces - yes, she already took out the 3cm+. I'm still a little swollen so I can't tell how different it is, but I'm expecting about a 1/5 size reduction. I decided I could live with that. As of now, it doesn't look much different from my "good" breast. But if she goes back in and only take a little bit, then that's ok, but maybe she ends up taking another 3cm or so, and then I will be in that position. How does she even know how much to take? If she could see it with her eyes, then she would've taken more the first time in order to get good margins. It's confusing. DCIS not being picked up in other parts of the breast is definitely a major worry.

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited May 2017

    marycal,

    I think unless you have a lump or use can see enough to use radiology and a localising wire it is hard for the BS to know what she aiming for - hence the take backs in some cases.

    Djmammo is a radiologist - some very sensible posts - you could should him a line to clarify - I am a little out of "science" depth on it. I personally had a small satellite DCIS 3.5 mm away from the main tumour not picked up by the MRI, ultrasound or mammogram - not an issue since my surgery was mastectomy but it came back on the pathology - but everyone is different.

    My understanding is low grade DCIS is hard to pick on scans

    😊

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