ILC and mammograms

Houndmommy
Houndmommy Member Posts: 377
edited June 2014 in ILC (Invasive Lobular Carcinoma)
ILC and mammograms
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  • Houndmommy
    Houndmommy Member Posts: 377
    edited June 2010

    Hoping for some clarification (I am considering removing healthy breast) - I was under the impression (based on things I have read)  that ILC generally doesn't show on mammograms.  When I asked my surgeon, he said that ILC's DO show.  My mammos identified suspicious areas that were biopsied and dx'd as "IDC with lobular features".  I'm assuming that it was the IDC that the mammo saw.  After my mx, they found IDC and ILC.  Also, do MRI's show ILC?  Anyway, I'm confused. 

    Thanks for the help!

    Kim

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  • nagem
    nagem Member Posts: 353
    edited June 2010

    MRIs are more likely to show ILC. So if you save the healthy breast, you might want to request MRIs alternating with mammos. I got sick of all the stress and just had them remove both. But not everyone wants to do that.

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  • cathmg
    cathmg Member Posts: 278
    edited June 2010

    Hi Kim,

    I found a dimple in my breast in 6/08, and had a clear mammogram a year before. Then a had another mammogram to check out the dimple-clear again. The tumor (5 cm!) showed up  a bit on US, then on MRI where it was shown to be quite large. Wish my doc had ordered US or MRI long ago because I had dense breast tissue-that's water under the bridge now!  I had a bilat mastectomy-I went with the most aggressive treatments possible because of my age (43 at the time).

    Best wishes on a very hard decision,

    Catherine

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  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2010

    Let me just say that I had 12 years of all-clear mammograms, then in year #13 they discovered I had a 4cm stage 3 ILC breast cancer. My breast surgeon had a hard time seeing it even after it was pointed out to him, and he was impressed that the radiologist had found it. Also, the pathology report showed multi-centric ILC -- so the mammogram missed more than just the largest tumor.

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  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    ILCs can show up on mammograms. In my case it was with a mammo that the reader identified an "area of suspicious density." US also detected this, and MRI gave the best images of it.

    It was probably there when my previous mammo was done, but it didn't show up then, or else the reader didn't see it.

    The digital mammos they are doing now are a definite improvement over the earlier ones.

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  • Kathy044
    Kathy044 Member Posts: 433
    edited June 2010

    Breast density might be a factor. My early stage, (1.6 cm) tumour did show up on a routine screening mammogram. I was age 65. BTW according to the pathology report the "stellar mass" or central portion was 1.6 cm, there were threads leading off from this so that the surgeon had to cut out quite a large chunk abt 5cm x 8cm x 5 cm in order to ensure clean margins, I assume the total size doesn't count in the cancer staging. 

    FWIW, now that I have finished chemo and radiation I asked my onc what followup testing I will have and was told just annual mammograms. MRI's, while useful in my case in planning surgery, show up too much activity.

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  • fortunate1
    fortunate1 Member Posts: 644
    edited June 2010

    I almost went for a bilateral for ILC, but my oncologist said there was no medical reason to do so and I trusted him. It still makes me nervous every now and then, but he says that lobular can be found and I know that I'm being monitored. Good luck with your decision, it is so hard.

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2010

    Hi Kim,  

    I asked a similar question to my oncologist. I asked him if DCIS and LCIS can be found by mammogram before they become invasive. (I did NOT want to need chemo again.)    His answer was that DCIS may show up if there are calcifications (I didn't have calcifications with my DCIS and it did not show up!)  or an architectural distortion.  DCIS shows up on MRI.  LCIS does not show up on mammograms nor does it show up on MRI.

    Lobular may show up on mammograms.  Finding it depends on it's shape, density, location, breast density, the quality of the mammographic equipment, and the experience and dedication of the person reading the mammogram (among other things).  If it is a small invasive tumor it is frequently missed and is only found incidental to some other procedure.  It may not be found by mammogram or ultrasound until the tumor is large.  MRI is much better at finding lobular and at determining the extent of the tumor(s).  MRI is more sensitive, therefore, may find other "things" that are lighting up and need to be biopsied.  

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  • Houndmommy
    Houndmommy Member Posts: 377
    edited June 2010

    Thanks for your replies.  After everything I had read I was really "thrown for a loop" when my surgeon said ILC could be seen on mammos like it was no big deal.  My yearly mammo showed 2 suspicious places that came back IDC but when I had my mx, they found IDC. ILC, DCIS and LCIS.  The radiologist I worked with before my surgery (besides the original US biopsy I had an MRI guided biopsy and 2 more US guided biopsies) was very good and recommended I have follow up MRI's  but the surgeon doesn't seem very concerned.  I will be seeing him for follow ups over the next 5 years and now I'm not sure I trust his judgement. I'll be meeting with my OBGYN next month and I will discuss this with her as well.  If I keep the "healthy" breast I want to make sure I am followed appropriately.  I wish I could work through the radiologist - I really trusted her (she is a young BC survivor herself).

    Thanks again!  Kim

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Both LCIS and ILC have a reputation for being sneaky and not always showing up on imaging. But they certainly can -----My LCIS was found by mammo and my mom's ILC was found by mammo. Alternating with MRI is a good idea (I go every 6 months for one or the other)--I figure what one might miss, hopefully the other will catch.

    anne

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  • mymountain
    mymountain Member Posts: 184
    edited June 2010

    Hi Kim,

    My ILC was found via mammogram, but it was "surrounded" by DCIS so not sure if that's which was more prominent.  I didn't have an US, but MRI, and most of the original tumor was removed before I had I had the MRI.  Then had a partial mastectomy and had a pre rads mammogram (standard protocol where I was treated) which showed more areas of suspicion, and they would NOT do rads until the new area was biopsied..  By the time I would have done another bx, I would be left with about 1/4 of a breast so I decided to have the mast with diep recon.  Final path showed extensive LCIS and an intraductal papiloma, but no more tumor. (LCIS never showed up on anything)

    Now I have alternating MRI/mammo every 6 months on the remaining girl, but I'm leaning toward cutting out the MRI, as it just stresses me out so much.  I've been told the digital mammos are much better at finding all bc's so I'm ok with that.

    MM

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  • amlg1
    amlg1 Member Posts: 596
    edited June 2010

    After 22 years of clear mammos,the 23rd year,mammo showed enlarged lymph nodes,nothing in my breast until I went for the MRI.My BS,did lumpectomy,all clear margins.

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  • Kleenex
    Kleenex Member Posts: 764
    edited July 2010

    Don't know if my ILC would've showed up using mammography, because it was way up on my chest and not in an area that they could get into the old equipment without great acrobatics. It showed up very clearly on US and via MRI after I found it. The current techs using an amazing digital machine and set of accessories get unbelievably clear images of my breasts on my follow-up mammograms. My oncologist and my insurance company don't think I need MRI's. Per the oncologist, all sorts of things light up and you're going through the pain and discomfort of biopsies for what generally turns out to be nothing. So the plan is this thorough mammographic follow-up (truly, these images are AMAZING - these women get my breasts practically flat in multiple directions and even have captured striated muscle tissue in their images - ow! - and you can see all of the little pins that the surgeon left in the tumor bed) with US if something looks suspicious. I'm actually good with that.

    Added 7/14/10 - part of why I feel fine with the mammographic followup for now is that I did have a thorough MRI prior to surgery, and the only thing that lit up was the known tumor.

    I have heard that IDC and DCIS show up very well on mammography, and that the only way to tell if there's LCIS, which may not even turn into cancer, allegedly, is by looking at it in the pathology lab.

    I did briefly consider a bilateral, but as it didn't change the risk of spread or my survival rate, and because I supposedly have a very low risk of recurrence in the immediate future per my Oncotype DX test, I decided to go with just the lumpectomy and radiation. If it shows back up (the theory is that my risky time is more like 10 years out), perhaps I'll have to revisit the surgery question. I have been happy to just have dealt with the radiation and the fun of Tamoxification without dealing with a big surgery or recovery (I would've wanted reconstruction).

    Good luck to you! 

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  • DFC1994
    DFC1994 Member Posts: 163
    edited July 2010

    My ILC(2 tumors) did not show up on mammogram.DCIS did show up on right breast and after a biopsy confirmed DCIS my surgeon sent me for an MRI on both breasts where 2 areas of concern showed up on left breast during MRI.I chose to have both breast removed and afterwards path report came back ILC 2 tumors in left breast.

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  • lynn1575
    lynn1575 Member Posts: 13
    edited August 2010

    My ILC tumor was partially visualized on mammogram (it was down at the very bottom of my left breast where the underwire of my bra rests). It did show on ultrasound.  I had a MRI prior to my surgery to make sure my ILC wasn't multi-focal or in both breasts.  MRI was Negative! Not even my known biopsy-proven breast cancer in my left breast showed on MRI!.  Radiologist is recommending yearly MRI's and I think they're a waste of money ($2800).

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