DCIS along with ILC

gonnabstrong
gonnabstrong Member Posts: 51
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was recently told I have both DCIS and IDC. Has anyone else ever had this combo? and what was the outcome.

Sorry for putting the wrong Dx in subject.

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2009

    I had DCIS and ILC.  Is that what you are asking about?  I have read that it is a combination that is not found very often. If this is what you are wanting to know about, please let me know and I'll be glad to help where I can.  Hugs. G

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  • gonnabstrong
    gonnabstrong Member Posts: 51
    edited August 2009

    Gitane, to be honest I'm not completely sure at this moment. When the surgeon called me last Thursday with my core biopy results she said DCIS and something else, I remember the word lobular along with a bunch of medical mumbo jumbo. I just went into my own wolrld when she said "we found two types of cancer" so not everything she said sunk in. Later that afternoon I tried to get ahold of her again but could only speak to a receptionist who tried to read my diagnosis back to me but wasn't making much sense, she said DCIS and then something about Invasive carcinmoma 2 of 3. At this point I have only had a core biopsy and am waiting to have the snb.

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2009

    I understand completely where you are coming from right now.  Let me know if I can help.  G.

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  • victoriasecret
    victoriasecret Member Posts: 333
    edited August 2009

    Dear GBS

     My path although I do not have it in front of me is a combo platter..he he.. too sorry have to  I find some humour in all this..my surgeon on palpatation right off said she thought mixed tumour ..in the beginning reports said DCIS and I was like PHEW glad it is just that !!

    She staged me right away at 2 maybe 3  she absolutely knew what she was dealing with...I FREAKED....Lobular was never mentioned I had biopsy,MRI,mammo,us..

    So I think and I will know more on Fri that my tumour is Lobular with mixed DCIS.

    My battle plan is in the works !!

    much love

    Cheryl

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  • victoriasecret
    victoriasecret Member Posts: 333
    edited August 2009

    Gitane what is pleomorphic ?

    love C

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2009

    Most ILC is "classic".  This means small, round, uniform cells, small nuclei, low mitotic rate (ie slow growing), single file strands or individual cells in the stroma, usually low nuclear grade (grade 1)  ER+ PR+ Her2 -  .  

    My ILC was described by the pathologist as having " single file strands of polygonal cells. "  Then he wrote, " The pattern suggests ILC, but the nuclei are somewhat more pleomorphic than seen in the classic variant."  My cancer has an extremely low PR level, "classic" ILC usually has high ER and PR levels.  Mine was given nuclear grade 2. This is what my pleomorphic ILC is.   In other ways my ILC is like the classic form.  It is diploid, has a very slow growth rate, is ER+ and Her2 - .   

    Studies I have read say that pleomorphic lobular is more often Her2+, and tends to be faster growing, and may have high nuclear grade (grade 3). 

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  • mymountain
    mymountain Member Posts: 184
    edited August 2009

    Hi Ladies,

    I have been lurking for about a year.  Dx'd with ILC w/DCIS at the margins.  Had excisional bx, segmental mast, and just before I started rads more areas of disease were found.  Had a total R mast w/Diep reconstruction last Sept.  My er was 90% + Her 2 neg, but also was PR -.  Am currently on tamox and am being urged to have a total hyst/bso by my gyn for (hopefully) tamoxifen related gyn issues (uterine lining, growing fibroids, and growing ovarian cyst).

    I never thought twice about having ILC with DCIS and didn't know they aren't tipically found together.  Have also been told by my onc that the pr- wasn't significant.  Should I be asking more questions about either of these?

    Thank you for reading my story!

    MM

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  • gonnabstrong
    gonnabstrong Member Posts: 51
    edited August 2009

    I finally got my pathology report. The receptionist at the surgeons office apparently told me wrong as far as the ILC is concerned. I have DCIS grade 3 with IDC grade 2. Not sure yet what all this will mean in the end but I am hopeful!

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2009

    MM,  I was told that PR- may mean two things.  1) ER+PR- statistically have a lower probability of responding to tamoxifen.  The jury is still out as to whether AI's work better than tamoxifen in cancers that have low PR, but it is looking like they do work better, and in some cases much better.   If you get the TAH-BSO you could try an AI.  2)  ER+PR- have been shown to have a slightly worse prognosis in years 1-5, not after that, primarily because they tend to be more proliferative than + + tumors.  However, lobular tends to be slow growing, so I'm not sure if this is true for us.

    Just a note:  Although my IHC showed no staining for PR, my OncotypeDX score showed that I did in fact have a tiny bit of PR, but it was barely above the cut off point.  I don't know if that matters, probably not. 

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2009

    gonnabstrong,  Looks like we ILC ladies are going to lose you to the IDC threads.  Stay hopeful,  you have every reason to be!   G.

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  • gonnabstrong
    gonnabstrong Member Posts: 51
    edited August 2009

    Thank you Gitane. We are all sisters, no matter what the dx is.

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