LCIS that is both pleumorphic AND has necrosis?

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chapmapb
chapmapb Member Posts: 5
edited March 2019 in LCIS (Lobular Carcinoma In Situ)

Received my results this week and am still struggling to get my arms around diagnosis and the recommended treatment. Apparently I have LCIS which was initially a relief but then due to the cells being both pleumorphic and necrotic, they are recommending I go back in for surgery to excise it. First, is it uncommon to have both? Is it common to move right into surgery with this? I confused as to whether this would be done as a preventive measure or as additional testing on all of the cells? Thank you!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2018

    Almost all the time an excisional biopsy is done after a core-needle diagnosis of any kind of LCIS. In 10-20% of the the cases, DCIS or invasive cancer can be found in the area of the smaller biopsy.

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  • chapmapb
    chapmapb Member Posts: 5
    edited July 2018

    Oh, interesting to hear. The nurse at the Breast Center said after my core-needle biopsy results came back that surgical excision was usually done in response to one of those two conditions being present but was not done in the majority of classic LCIS diagnosis (where they might recommend continued observation or preventative treatments). Here I thought I was just one of the lucky few, ha.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2018

    I have read that some places are not doing excisions on subsequent findings of more LCIS later after first diagnosis if the imaging doesn't support it. Last biopsy I had I told the radiologist she wasn't to come up with more, since we both figure there is a good chance she'd find some anywhere she stuck me:)
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  • Lea7777
    Lea7777 Member Posts: 274
    edited July 2018

    Is it common to move right into surgery with this?

    Yes, excisional biopsy is the most likely approach, even for classic I believe.

    I confused as to whether this would be done as a preventive measure or as additional testing on all of the cells?

    Preventive--as there is a very low risk of LCIS becoming cancer, though this is rare.

    Additional testing--As mentioned above, the upgrade rate to cancer is 20% or less.

    Best wishes with your additional procedure.


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  • chapmapb
    chapmapb Member Posts: 5
    edited August 2018

    Thanks for the replies! Had the excisional biopsy and found out on Friday that they found invasive cancer in four of the samples. Meeting with the surgeon and the breast center nurse on Wednesday to schedule MRI and oncologist appointment. Still in a bit of shock.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2018

    I'm so sorry for your diagnosis chapmapb.

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  • chapmapb
    chapmapb Member Posts: 5
    edited August 2018

    Thanks. Things just seem to be moving so quickly. Everyone said that it wasn't going to be a big deal, that this would be a pretty rare finding. Guess I'll feel better when I know what the plan is.

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  • Amiela
    Amiela Member Posts: 1
    edited August 2018

    You are getting good up-to-date treatment to have been given this recommendation for surgery. Pleomorphic LCIS with or without necrosis is more agressive. I have recently had surgery for this (but had no necrosis) and other post-surgical options are being considered. I had a segmented mastectomy which is bascially a lumpectomy. I really hope you got or will get the surgery. For me it was a relief because at first my old-school oncologist just wanted to wait and see (some markers were put in after biopsies, I also had a complicated syst with calcifications) but he retired, thankfully, and a new oncologist explained that pleomorphic LCIS was more agressive and wanted to do surgery. The expert thinking about what to do about it has changed just in the last 2 years. Keep up-to-date with latest research by using the "In past year" option found if you click the "Tools" when doing a Google search. A lot of new research has come out in 2017 & 2018. The surgery is done BOTH to prevent cancer and to further examine what is taken out. You should get a Pathology Report that your oncologist can explain.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2018

    Thank you for chiming in and sharing your perspective, Amiela! We hope your recovery is going well!

    The Mods

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  • Gusta
    Gusta Member Posts: 10
    edited March 2019

    Just want to say thanks to Amiela for that excellent Google tidbit. PLCIS is still so 'new' it's really, really challenging to sift through the information, and out-of-date information just clogs up my brain. Every smart strategy helps!

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