Dcis, bi Mastectomy, additional DCIS found

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Lannie166
Lannie166 Member Posts: 4
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

In June of 2012, I was diagnosed with multifocal DCIS NG3,with no comedo necrosis in my left breast.  After my double mastectomy (right taken off as precaution), I had my spacers put in with skin saving surgery.  My pathology came back with more areas of DCIS, NG3, non-comedo, non invasive but I had no clear margins.  In November, I had my second surgery to replace the spacers with Silicone permanent implants.  Radiation was recommended for treatment after surgery, my plastic surgeon was not for it.  He talked to my radiation oncologist and they devised a plan to remove as much residual breast tissue he could (but still leave enough for my skin to survive).  My pathology came back with several additional areas of DCIS (which they call residual) and found comedo necrosis.  I am undergoing radiation therapy but I am confused.  I can not find much information on  some of the things found on my pathology results.  In one area it stated that they found DCIS, high nuclear grade with retrogade involement of lobules.  What the heck is that?  And secondly it says focal distorded DCIS found.  What the heck is that?  I am completely confused and doctors speak a language I cant understand.  Anyone have some laymen terms?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2013

    My understanding of retrograde involvement of the lobules is that DCIS was found in the lobules, rather than the ducts where it would be expected.  The lobules would be more likely to have LCIS or ILC, but yours had some DCIS.  My pathology report said the same thing but it was termed "cancerization of lobules" but it meant that because the ducts and lobules are commected in the breast structure some DCIS got in there too.  The distorted comment on your report may have to do with the apperance of the cells themselves - more aggressive cells may appear to be distorted (less normal looking) which would correlate with your high nuclear grade and comedo necrosis.  The grading system is looking at how far from normal do the cells look microscopically - grade 1 cells look more normal than grade 3 cells, so high grade cells would appear distorted.

    Someone with more info may come along shortly - sorry that you have had these complications, but hope things calm down for you post-radiation.

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2013

    It is possible for DCIS to be found in the lobules also.  I had that as well.  I'm not sure if it has any huge difference in terms of diagnotic implications.  Sounds like you had an incredible amount of DCIS.  You also listed a diagnosis of IDC, but didn't mention that in your description.  That would be the more serious thing to worry about.  Good luck with rads (I start this week myself).

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  • LAstar
    LAstar Member Posts: 1,574
    edited January 2013

    Which margins were involved? Anterior? Posterior? All?

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