New with questions

nash
nash Member Posts: 2,600
edited September 2016 in ILC (Invasive Lobular Carcinoma)
Hi, I'm a new ILC gal. I'm 38 years old with two small children, and I was just diagnosed by core biopsy a week ago. Don't have any hormone receptor or HER2 info yet--all I know is I have ILC and LCIS in the same lump. The score was 5/9 for the ILC part.

My mom has Stage IV HER2+ IDC, so I'm well versed in HER bc, but am completely clueless when it comes to ILC. Hadn't even really heard of it until there it was in my path report.

So I have a couple of questions:

1) From what I've read, ILC is more of a thickening than a lump. The onc can feel thickening in the breast, but the way I found the cancer during bse was that I have a very palpable lump. It shows up on U/S as a lump, also. So is it weird to have a lump along with the thickening? Does that mean there's probably more cancer in the breast than the 1.2cm lump they measured via U/S?

2) Did all of you get a more specific diagnosis of your ILC--classic, pleomorphic, tubulolobular, etc.?

3) I read the studies from 2005 that say chemo isn't as effective for ILC as IDC, and then read the thread on this board related to that. It seems like the oncs still recommend chemo for ILC based on the situation. Have there been any more recent studies or recent discussions at ASCO on the topic?

I meet with the surgeon at the end of the month, and go for scans next week. The onc said she'll probably recommend chemo no matter what based on my age. We're also doing BRCA testing.

Thanks in advance for your input!
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Comments

  • mer1957
    mer1957 Member Posts: 534
    edited June 2007

    My ILC was also felt more like thickening but I did have a lump. I had the chemo before surgery (neoadjuvent) and the lump seemed to go away. However when they did the mastectomy the cancer was still there but I got good margins. I don't think the margins would have been so good if I did not have the chemo first. I had no cancer in the lymph nodes but I don't know if I did before. The cancer measured 7.5 cm in the largest diameter so I am Stage III. I had my mastectomy 5/1 and started radiation this week (33 treatments.) My cancer was in two separate locations. I am er/pr+ so I will be starting Tamoxifen. Her2neu. It doesn't say classic, etc. Tubule formation score 3. Good luck.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2007
    The radiation oncologist said most ILC will rank grade 2 or 3 simply because of how they add up the scores with ILC showing a tubulor or pleomorphic architecture. I opted for bilateral mastectomy, which I just had Wed, because I'm a nervous type who worries about recurrence and I wanted to avoid rads.

    MD Anderson did a study showing that ILC is less responsive to chemo, but I think that chemo is done if lymph nodes are involved. There is also an OncotypeDX test that your tumor can go through to see how receptive it would be to chemo.
    The scores go from 0-17 for no chemo, 18-30 for they aren't sure how beneficial or beneficial it would be and 31-100 to do chemo for sure. I scored 20 and both I and onco thought that the 2% benefit would be outweighed by the side effects, so I opted out of chemo. That, and the MD Anderson study made me feel OK with that decision.

    My rad onco (who I wish were my "regular" onc) said that most oncologist treat ILC and IDC fairly the same at this time though some think grading ILC is not fair because it starts out higher but responds better than IDC at the same grade.
    I am sure you will get lots of info here.
    Wait for pathology and then you can make better decisions.

    So very sorry you are joining us and especially having had dealt with this wit your mom.
    How is your mom doing? Hopefully in remission.
    Welcome and you will find the gals here very kind.

    Editing to add, my surgeon said when he palpated me for the preliminary exam, he felt NOTHING. He said if the biopsy had not shown cancer he would never have thought I have it. I had weird dreams that sort of guided my hand to the area of where I thought something was odd...it did not show up on mammogram, did not show up on ultrasound and was finally found on breast MRI. I was lucky they gave me no problems getting that level of screening.

    BEST to you!
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  • gracejon
    gracejon Member Posts: 972
    edited June 2007

    Surgery measured nmy tumor most accurately but it matched exactly the measurement given on the MRI I had pre operatively. The MRI did NOT identify the entire LCIS, ADH or ALH I had on my prophalactic side. Your oncologist will certainly have a discussion with you on the doctors recommended treatment after surgery and the entire tumor is out and you have ER/PR and tumor grade size, lymph node status and HER2 info. Also if you are node negative, ask about Onco DX test. I think it may be worthwhile. They dio offer it to me when I was diagnosed over 2 years ago but insurance coverage at the time was iffy and since my personal funds tend to stay in a negative balance, I was not willing to pick up the tab. Since that time, my insurance is picking up more diagnostic stuff and things like wigs for baldness post chemo.

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  • nash
    nash Member Posts: 2,600
    edited June 2007
    Thanks for the replies, ladies. I appreciate the info.

    Wallycat, glad to hear your surgery is over. Hope you are doing well. Thanks for asking about my mom. She is doing remarkably well (5 years since being diagnosed stage IIIB, 3 1/2 years as Stage IV. She's on indefinate chemo). She goes for scans right after I do, so we'll see how thing look. She's feeling OK, though. We had to laugh while trying to schedule her scans and my scans and coordinating those with my kids' schedules. It was actually sort of comical trying to fit everything in. We thought maybe we could go for some sort of group discount.
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  • dotbowels
    dotbowels Member Posts: 1
    edited July 2007
    Sister was recently diagnosed with: Infiltrating mammary carcinoma with lobular carcinoma in situ.

    What is survival rate when caught reasonably early? Thanks
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  • nash
    nash Member Posts: 2,600
    edited July 2007
    dotbowels, do you know what stage your sister's cancer is? By reasonably early, do you mean Stage 1 or 2? To know the stage, one needs to know tumor size, lymph node involvement, and if there is any evidence of distant spread. Also, hormone receptor status (ER/PR) and HER2neu status (positive or negative) are important prognostic indicators.

    That being said, everyone is a individual, and the statistics don't really mean much. Some people with small tumors that are aggressive don't do well in the long run, while other people with very large tumors end up being fine. It all comes down to how the patient responds to whatever therapy is prescribed.
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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2007
    Dotbowels,
    Lobular in situ is, by many, considered PRE-cancer or not really a cancer at all, simply risk for getting BC much higher.
    Her infiltrating I assume means invasive, and then they need to tell you if it is ductal or lobular....
    Also need to determine hormone receptor status of tumor and lymph involvement.
    I hope your sister is doing well.
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  • mtlion322
    mtlion322 Member Posts: 29
    edited August 2007

    Hi, I am new with stage II invasive lobular 2.2x2.1 cm all lymph nodes are negative(I had a bi-masectomey 07-24-07). Also, I am er/pr pos and her/neu(not sure if this means neg or pos). From what I am reading alot of you ladies had pre chemo, I was not offered that option, have any of you ladies did your surgery w/out pre chemo? If so, did you have a good sucess rate? I also have a compromised immune system, I have 2 forms of arthritis and crohn's disease! I found a palaple lump on 06-04-07. They orignally thought state one w/a lump of a little over 1 cm w/a core biopsy and the mri. They also found after surgery pre-cancer in my lft breast.

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  • SusanB12
    SusanB12 Member Posts: 54
    edited August 2007
    I was diagnosed with ILC of my left breast five weeks ago now. In January I noticed a thickening around my nipple area
    which I showed to my gynecologist but she thought it was nothing. I never noticed a lump though. She gave me a script for a mammo and ultrasound but unfortunately I waited until June to go. I was lucky I think it showed up on the ultrasound. The biopsy came back it was 1 cm.
    The surgeon though it was more like 4.5 cm. The MRI showed it to be in three different places. I am awaiting surgery now and biopsy results on my right breast to see if it has spread.
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  • Lynn12
    Lynn12 Member Posts: 1,008
    edited August 2007
    Cindy,

    I think a lot of ILC gals have surgery first because the tumor is not seen well in imaging and no one knows the size. Mine was thought to be about 1cm, had mastetomy and it turned out to be 7.5cm. I think if the surgeon and onc knew the size first, they would have put me on chemo first. I had 6 TC treatments after my mastectomy, then 30 rads, now on tamoxifen.
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  • mtlion322
    mtlion322 Member Posts: 29
    edited August 2007
    One thing I have found to help me with this journey is CarePages.com. This is another great support system for us newbies!
    To SusanB12 and Lynn12 I realize that while these diagnostic tools are good they are not yet great(someday)! At least the Mri is finding this! My Mri on the left breast just showed cell changes nothing questionable, so after the surgery it was a surprise to find that it was pre-cancerous!
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  • Nanagirl
    Nanagirl Member Posts: 22
    edited September 2016

    Hi all- I was diagnosed Oct 2015 withILC stage 1b - had radiation and lumpectomy and am on Arimidex- had follow up Mamo 6 months after surgery - Mamo never showed cancer before only showed up on MRI- my question is should I have Mamo, MRI and ultr sound for year screening- thank you for your inpu

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  • Lab-girl
    Lab-girl Member Posts: 25
    edited September 2016

    nanagirl,

    If you can get those screenings approved I would say it's a good idea. My dr's are recommending a 3D digitalmammogram only of my left breast but I'm considering an MRI every few years even if insurance doesn't pay...

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  • MFalabella
    MFalabella Member Posts: 176
    edited September 2016

    Hi there,

    My ILC was also a very large palpable lump. Thank God, or I may not have found it. I am 45 and was diagnosed at 44, so still have a long life ahead of me. Chemo was a bit in question for me until they found cancer in my sentinel node. That was the nail. I hope you are doing well. Chemo for me so far hasnt been too bad, I am hoping further treatments are the same, I have 15 more to go. ugh


    xoxomichelle


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