ILC in Aerola?

MinAZ
MinAZ Member Posts: 368
edited June 2014 in ILC (Invasive Lobular Carcinoma)
ILC in Aerola?
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  • MinAZ
    MinAZ Member Posts: 368
    edited February 2008

    My friend is in the diagnosis process. From a needle biopsy, apparently there is ILC in the skin/dermis of the aerola area. MRI today but no results yet; more biopsies expected. I'm an IDC survivor and just don't know much (yet) about ILC but I think I'm more worried about this than she is.  Has anyone heard of it expanding to the skin? Is that an especially bad sign? She's been told to expect chemo followed by mastectomy.

    Thanks - Minz 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    Hi Minz...I've never heard of it specifically being in the areola area either...keep us posted - we're the ILC experts! Until all the stats are in, we won't know what's what. Best wishes to your friend...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    Hi Minz,

    I just had a lumpectomy to remove 2 ILC tumors in my breast.  Both were in same quadrant.  One tumor had spread to my nipple, so I had my nipple removed.  I was worried too, but my doctor said that it was nothing to worry about and to feel lucky that they could get these buggers out of me.  I was told by two doctors that because of the size and location of my tumors, that having a lumpectomy with radiation and maybe chemo had the same prognosis for me as a mastectomy.    So I said good bye and good riddins to my nipple and the cancer.  At this time I am not sure if I am going to have reconstruction, or prosthesis. 

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  • zap
    zap Member Posts: 2,017
    edited February 2008

    Wow....some Illinois women are here! 

    Dear Minz,

    Has the word "Pagets" been used for your friend? I have IDC with pagets which translates to skin involvement of the aerola/nipple.  I would presume one could have pagets with ILC as well.  Pagets is a nasty rash that begins on the nipple and then moves to the aerola.  It is  tested  through a needle punch biopsy. Pagets alone is not a problem.  The problems is that 90% of the time there is an underlying cancer under the nipple, as was true for me.  Pagets is not any worse.  The dx  and treatment depends on the underlying tumor.  I did lose my nipple and aerola as the tumor was right beneath.  My pagets, per say, or skin involvement, did not require any additional treatment but the underlying tumor did with surgery, chemo,radiation and now arimidex.  Maybe this is far more information than you wanted.  That is simply my experience with skin involvement of the aerola, and may not have anything to do with your friend.

    Good luck,

    Susan 

    PS  Hi Laura and Nancy 

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  • MinAZ
    MinAZ Member Posts: 368
    edited February 2008

    Susan - I believe they ruled out Paget's. She said she'd not had the rash. I'm wondering if it's ILC that was in the breast and then moved into the skin. She's hoping to hear today about additional biopsies. I know they are moving fast on this.

    Thanks to all for your comments. When I find out more I'll post here.

    Minz 

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  • gandl
    gandl Member Posts: 88
    edited March 2008

    My path report said extensive LCIS with "pagetoid spread", so I think ILC can have something similar to paget's. The LCIS had filled the duct and was heading for the nipple.  I had ILC in six locations in addition to extensive LCIS, extensive atypical ductal hyperplasia and several papillomas.  The papillomas ended up being the cause of my nipple bleeding.  gandl

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  • MinAZ
    MinAZ Member Posts: 368
    edited March 2008

    Her biopsy said something about "carcinoma en cuirasse" and apparently that is different from Paget's or IBC. The onc says it's locally advanced, stage IIIb. She's doing neo-adjuvant chemo now, then mast. A couple of other tests are still pending, but we are all thinking positive....

    Minz 

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