Anyone with Invasive Lobular Carcinoma?

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Rovergirl
Rovergirl Member Posts: 194
edited June 2014 in Triple-Negative Breast Cancer
Anyone with Invasive Lobular Carcinoma?
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  • Rovergirl
    Rovergirl Member Posts: 194
    edited June 2008

    I was diagnosed with ILC and all the literature I read said it was almost always ER/PR positive ..... not me, I'm a triple negative.  Wondering how many other triple negatives have ILC?

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    Bumping this up for you.



    Perhaps posting on the ILC thread may draw more response too.



    Best to you,

    Tender

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  • Camama2
    Camama2 Member Posts: 44
    edited July 2008

    Hi,

    I was told that I had ILC and triple neg.  After doing research and noting that very rarely is ILC triple neg I pushed to have my tests done again as I was sure I wasn't triple neg.  Second test came back triple neg so I sent the test to an outside lab and paid the bill.  Found out that I was triple neg but not ILC.  Also discovered that it didn't really matter if I was ILC or IDC as triple neg was more telling.  I am 3 years out of treatment and doing fine!

     Laurie

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  • Rovergirl
    Rovergirl Member Posts: 194
    edited July 2008

    Last week I saw my oncol. and I asked him "are you sure I'm triple neg.?  Really, really sure?"  The doc. said yes he was sure but also thought after the surgery is completed it might turn out I'm IDC or may have both ILC & IDC.  I'm on neo.adj.chemo and my surgery will not be until the after the first of the year.   Doc. said it doesn't matter if I'm ILC or IDC my treatment plan would remain the same.  So far I'm doing fine with the chemo.  I'm glad to hear you're 3 years out of treatment.  There is a lot of depressing statistics about triple neg.'s. 

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  • beth4d
    beth4d Member Posts: 4
    edited July 2008

    I was just diagnosed with Invasive Lobular Carcinoma via open  biopsy.  I found the lump and dimpling that didn't show up on mammo or ultrasound (both negative tests).  I am HER2 negative and ER/PR positive and waiting on the node report as my sentinel node was affected.  My axillary nodes were taken. I started chemo today with a port and am a bit nauseated, but otherwise okay.  Good to hear that someone is 3 years out on treatment!  From what I've read from MD Anderson, lobular typically doesn't reoccur, once it is gone.  It also has a better outcome from that of IDC, even when ILC is more advanced.  I'm on neoadj chemo, and will have surgery after the first 4 chemos.  I'm also going to be genetically tested too.

    thanks for sharing!

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

    beth--my mom had ILC, (negative nodes on AND), lumpectomy, radiation, tamoxifen, and is now a survivor of over 21 years without a recurrence!  I was diagnosed with LCIS almost 5 years ago, had lumpectomy, am very closely monitored with mammos and MRIs, take tamoxifen which I will finish up with in about 3 months.

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  • beth4d
    beth4d Member Posts: 4
    edited July 2008

    I was just diagnosed with Invasive Lobular Carcinoma via open  biopsy.  I found the lump and dimpling that didn't show up on mammo or ultrasound (both negative tests).  I am HER2 negative and ER/PR positive and waiting on the node report as my sentinel node was affected.  I started chemo today.  Good to hear that someone is 3 years out on treatment!  From what I've read from MD Anderson, lobular typically doesn't reoccur, once it is gone.  It also has a better outcome from that of IDC, even when ILC is more advanced.  I'm on neoadj chemo, and will have surgery after the first 4 chemos.  I'm also going to be genetically tested too.

    thanks for sharing!

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