New here ...LCIS and Atypical "abnormal" cells found

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eileenj
eileenj Member Posts: 64


Hello everyone.  I was diagnosed back in 2011 with LCIS, left breast.  Went for my yearly mammo which surprisingly came back clear and then my 6 month MRI which found a small "something" on the right side.  Had an MRI guided biopsy which found Atypical abnormal cells (I need to speak to the doctor to find out which type), and just had an excision biopsy which found "more atypical abnormal cells." 

Im not sure what the "atypical abnormal cells" actually mean but I think it means I now have 2 dx's on my plate.  It is all so confusing and Im trying to collect information.  Still waiting to hear back from the dr as to the "meaning" of atypical abnormal cells which she states is a better dx than LCIS.  *shrugs*  Not sure of anything and thinking its time to think about a double mastectomy.  I do not see this getting better as my breast issues have progressed in the last 5-10 years.  Started with cysts being needle aspirated, to calcifications, to clusters and now LCIS and Atypical cells.

Any thoughts, advice is welcome!  Also, is anyone familiar with Dr. Amber Guth of NYU Cancer Center?

Just received report:

Atypical Lobular Hyperplasia; Fibrocystic Change, Prolilferative Type; Biopsy Site Change

Thanks, Eileen

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  • leaf
    leaf Member Posts: 8,188
    edited November 2013


    You have ALH plus LCIS, just like I do. Both are categorized as 'lobular neoplasia'. LCIS is more 'advanced' than ALH - meaning there are more atypical cells. LCIS is almost always multicentric (meaning there are often many different spots of LCIS in a breast), and often bilateral (in both breasts.) Presumably this is also the case with ALH.


    If I might take a rough analogy, the normal lobule is like a dead end street. The sidewalks are like the basement membrane. That's a line that separates the inside of the duct or lobule, where the milk travels, from the inside of the breast (the fat, nerves, etc.) There is normally a layer of cells that line the basement membrane (i.e. like parked cars in my street analogy.) If there are cars that are double or triple parking, that's analogous like a proliferative disorder (hyperplasia). If you have 'atypical' hyperplasia, that means the cells (cars) are beat up (so look abnormal -atypical). Its the 'atypical' (abnormal) adjective that puts you at measurable increase in breast cancer risk. If you have ALH, these beat up cars are lining the dead end street so you have double and triple parking in the lobule. If you have LCIS, these beat up cars are filling the entire dead end. (Some pathologists have described LCIS as 'marbles in a bag', to mix metaphors.)


    If you have invasive cancer, that's when the beat up cars cross the sidewalks from the street into the houses. The basement membrane 'keeps' the abnormal cells in the ducts and lobules, so there's no way they can get to the rest of your body. ALH, LCIS, ADH, and DCIS can't metastasize. If you have cells that have crossed the basement membrane, the abnormal cells have crossed the basement membrane into the fat/muscle etc and can get into the lymph nodes or beyond. You can't die of LCIS or ALH. If you die of breast cancer, by definition, you have had invasive breast cancer.


    Since the science of breast cancer prediction is in its infancy, there are a lot of unknowns, but I do not think there are any studies that have shown any definitive increase in breast cancer risk when you have both LCIS and ALH. They probably haven't studied it either, but its probably not unreasonable to assume that some ALH often becomes LCIS. This would be very hard to study, but probably many/most women with LCIS had ALH at some point in their lives.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2013


    Hi Eileen, and welcome to Breastcancer.org!


    Besides leaf's helpful analogy, you can read more about ALH in the article Certain Breast Changes on our main site.


    We hope this helps!


    The Mods

  • eileenj
    eileenj Member Posts: 64
    edited November 2013

    Just made an appt with a medical oncologist for 11/26...moving along the path to decisions...:)

  • eileenj
    eileenj Member Posts: 64
    edited November 2013

    Leaf, thank you so much for your interpretation of these issues.  :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    Leaf---I love your analogy about the dead end/cars/sidewalks--it really sums it all up. It stands to reason then if one has LCIS (the dead end totally filled up with many beat up cars all crowded together), then one automatically has ALH also (because if you didn't have the double and triple parked beat up cars in the first place, the dead end couldn't get all filled up).


    Eileen--hope that makes sense. If you have LCIS, you have already surpassed ALH (since the LCIS is the more serious of the 2 conditions) and a new diagnosis of ALH should not change your risk level or treatment plan. LCIS is the next step after ALH, and you already have been diagnosed with LCIS; they don't add the 2 risk levels together. Both LCIS and ALH are thought to be generally multicentric, multifocal and bilateral; meaning if you have one spot, you usually have it throughout both breasts. So even though it is a new finding, it was most likely already there before and just not found until now. But I can certainly understand the feeling of stress that goes along with finding anything; I have had a few "scares", but have not needed any further biopsies/lumpectomies, but I would definitely reconsider all my options if I did.


    Anne

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