Multifocal ILC

Trying2staypositive
Trying2staypositive Member Posts: 119
edited August 2019 in ILC (Invasive Lobular Carcinoma)

Anyone else have this? I might per the MRI. So far the biopsied area is left breast ILC grade 2 98%ER+, 95%PR+ and HER2 negative. Also found some LCIS.Looks like Stage 1 based on size, however theres another area of distortion on the same side on the MRI which could be same or another type. Super scary. The right side had one probably benign area they would watch and do another MRI in 6 mo but I chose a BMX. Lymph nodes look ok on MRI but surgeon said he will test during surgery and remove whats needed. I also have some adh/alh in the cancerous side on a separate biopsy.

It seems with ILC alot of women end up taking chemo and radiation when its multifocal even with the highly hormone driven profile. Also seems multifocal ILC more likely to spread when its still very small? I will deal with chemo after if I have to (they arent recommending chemo or radiation prior to surgery) even though my dr said its not always used when its such a high hormone positive profile.

However I am doing BMX w immediate recon w expanders and am a little worried about needing radiation after with multifocal. Any advice or insight anyone can offer?

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  • Lab-girl
    Lab-girl Member Posts: 25
    edited July 2019

    Hi. I had multifocal ILC IDC LCIS and DCIS on the same side. I’ve read quite a bit about multifocal disease. I don’t think multifocal disease alone warrants chemo or radiation (I did not have it) without a higher grade or ki67 # or lymph node involvement, for example. Multifocal breast cancer might have a slightly worse prognosis according to some articles and online prediction tools but it is not entirely clear. I had a single mastectomy but am getting he other side removed this year. I have taken tamoxifen and had a full hysterectomy. Switching to an AI in another year. I feel that multifocal disease may be a sign of a predisposition to breast cancer. I certainly have a family history of it. Best of luck!
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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited July 2019

    Thanks for your reply. In pre op testing apparently my gall bladder showed stones or is inflamed (chest xray saw it). Hoping this doesnt mess up my bc surgery? I did have symptoms I just didnt realize it was my gall bladder bc they are intermittent and more indigestion and mild pain. Oh boy. I cant catch a break here. Nurse told me this. Havent heard from surgeon yet if it needs addressed somehow before surgery. Definitely at least want to get my bc removed sooner than later. Its been since may since 3d mammo bc testing and biopsies took a long time. That said, my miotic score was 1 even though the rest made it a stage 2.

    How old are you Labgirl? How did you do with the hysterectomy and sudden menopause? Im just peri right now..

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  • Lab-girl
    Lab-girl Member Posts: 25
    edited July 2019
    Hi Trying2dtaypositive,Sorry about the gallbladder news. But at least they found it and hopefully they can wait to address it until after your surgery. I am 47 but was 43 when diagnosed and had ovaries out a year and a half ago. It took some getting used to (hot flashes, dryness, etc .) but I feel I have successfully addressed my all of my issues with various treatments and trial and error. I would say I now feel the best I ever have four years out. It is a process for sure but you will be fine. Make sure they do oncotype testing but it’s good that is seems to be slow growing. From what I’ve read, most ILC falls within the lower recurrence risk profile-mine was.
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  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited July 2019

    Trying2staypositive, I had multifocal disease and did not have chemo because of a low oncotype score, which pretty much trumps everything else. I did not know about the BRCA results or the LCIS prior to surgery but elected the bilateral anyway. I did know that it was multifocal (multiple sites) based on the MRI. My insurance company didn't want to pay for the bilateral based on the multifocal ILC alone, but said that if there was LCIS my risk of a contralateral occurrence was higher and they would pay for it (had a great BS that got them to change their minds). Not sure where their info comes from but they consider LCIS a greater risk for recurrence than multifocal disease. I did have to do radiation because of a positive node but not because of the multifocal thing.

    Sorry to hear about the gallbladder issue. I hope you get your surgery as scheduled so you can move on.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited July 2019

    Hi there. I had a mix of IDC and ILC in one breast, and the ILC was in two spots. Still the area was small enough to do a lumpectomy, followed by radiation. With your HER status I would not expect you will need chemo but as others have said your post-surgery Oncotype results will be the key determinant. Just get a second opinion if you can since ILC can be tricky. All best wishes.

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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited July 2019

    Thanks for all the support and replies. I guess the two areas (one ILC/LCIS grade 2 and one ADH/ALH) were too close together to get a good cosmetic result with a lumpectomy even though the ILC is small. The third questionable area on mRI is in the bottom inner quadrant whereas the other two are outer left. I am a DDD so kind of surpised they couldn't rearrange things on the two areas. Maybe has to do with external scarring-would be noticeable maybe?That said I wouldnt have chosen lumpectomy personally as I wouldnt psychologically be in for all the constant follow up testing for the remaining tissue. I do wonder if I should biopsy the inner quadrant before surgery...but what for? It wont tell me about my nodes and that probably matters most.

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  • OnTarget
    OnTarget Member Posts: 447
    edited July 2019

    I had 3 ILC tumors on the left, and one on the right. Node negative, Er+,PR+,HER2-.

    Intermediate Oncotype score, so no chemo. I chose to do a BMX.

    I'm doing Ovarian Suppression + AI.

    In the pathology, I had some DCIS, LCIS, ALH, PASH. The boobs were doing lots of weird things!

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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited July 2019

    Thanks for all the replies! For those of you that had mutlifocal disease based on MRI prior to surgery, did you have more biopsies? Makes sense if doing lumpectomy but I wonder what will be recommended since I am doing bmx? I have ILC in one, adh/alh in another and a third area same side thats questionable. At first I said why bother since extent will really matter and be determined more by lymph node status I think? Im just thinking I cant see my insurance paying for more diagnostics at this point. Especially bc only MRI can see it, and that means MRI biopsy at some other facility. 3D couldnt even see the third spot nor could ultrasound....radiologist didnt recommend further biopsy but I was already diagnosed at that point. What do you all think?

    No one has freaked about my gall bladder issues yet but to tell the truth I dont think the surgeon looked at my pre op testing yet....
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  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited July 2019

    I did not have more biopsies after the MRI showed multifocal disease, but my BS had told me that a lumpectomy wasn't really an option for me because the disease was too extensive. I would think more biopsies would only be in order if you're considering a lumpectomy. Like you said, an MRI biopsy is expensive. The pathologist is going to go through the breast tissue pretty thoroughly after surgery, so you'll know what else is there after the fact.

    Sending you positive thoughts!!

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  • OnTarget
    OnTarget Member Posts: 447
    edited July 2019

    I had 3 ILC tumors in the left breast and one small one in the right. Before surgery we knew about 1 in each breast, the two babies were found afterwards. I didn't need radiation.

    I had biopsies on both tumors before surgery. I did have a 2-3cm spot on the left that we didn't biopsy because I'd already found cancer in that breast and had decided on BMX.

    I'm not sure about ILC spreading when it is small. My big tumor was 3cm and it had two babies. I don't think they consider the tumor in the other breast to have spread, it is a second primary I think.

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  • Moag
    Moag Member Posts: 12
    edited August 2019

    I believe multifocal bc is quite common, and from my understanding also fully treatable. It is the largest tumor that counts when staging/treatment is decided.

    The Er/PR percentage is not important, as long as it has receptors the drugs do work, studies show that

    I have some similarities here; ILC with a smaller satellite nearby, then some LCIS and DCIS. My breast was just crap, and had to go. Did a mastectomy, then later on another one when they found I hand the Brca2 mutation. Did four rounds EC chemo and radiation, because of one pos node. Later I did the ooph and started AI Letrozol.

    It has been hell, but now I am in a better place. #hopefulandmorehappy

    Hang in there!

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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited August 2019

    So now Im confused because MRI didnt really match what surgeon said-granted the final report was not ready. The ILC definitely was enhanced but nothing was seen on mri around the adh/alh and all other enhancements on both sides are mild and appear to be “fibrocystic changes and or changes seen in sclerosing adenosis”. They did see an intramammary node on the non cancer side but then stated no nodes looked enlarged. Size on MRI looks small, but I know ILC is not easily sized on imaging or even seen. Waiting on bmx on 9/10-praying that it hasnt spread to my nodes. My family is freaked out because Im the youngest diagnosed yet we are all negative for genetic mutations. (I got tested for 34 all negative). My mom thinks ILC is at least or more aggressive as the IDC she had. Mine is grade 2 so guess not as slow as it can be. At this point I just want surgery to get here already. I have a month. Its on my sons bday 😢
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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited August 2019
    Moag, Im getting bmx bc I too also have fea, adh and alh nearby and next to the other area where the ILC is, focal LCIS was also found. So yes my breasts are also a mess!! Never had a biopsy till the two this year. I beat myself up over being 8 mo late on my mammo, then again this was the first 3d mammo I ever had and the only thing that saw the ILC. I have come to realize if I was on time, maybe wouldve been even smaller and missed then caught another year from now when was even bigger? MRI seems to think the ILC is around 7mm but I know mri is often wrong and it could be larger.
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  • Stherye
    Stherye Member Posts: 43
    edited August 2019

    Dear Trying, I am so sorry you are dealing with this.

    I just wanted to tell you about my experience if it can only help a little. I don't have bc, but last year I was diagnosed with a papilloma and FEA. It was my first mamo and my first biopsy at the age of 42.

    Four months later I asked for another us as I had some weird kind of pain in my armpit. They saw another papilloma. I opted for BMX even though it wasn't indicated. The thing is I was worried all the time because of my Fea and I wanted to do everything I could.

    I am at peace with my decision, the result is amazing, my new breast is even prettier. I also had my gallbladder removed the year before and I have no more issues regarding it. I don't have more stomach problems (later I discovered it wasn't my stomach but my gallbladder} the only thing is that I cannot eat peppers of any type, apart from that, I can eat everything, well except gluten, I discovered later I am a celiac, but that is another story.

    Just wanted to share I am extremely happy with my pbmx and also with my gallbladder removed.

    I have never felt healthier in my life, probably the gluten free diet has something to do, I don't get sick anymore, no flu, no colds, no headaches..

    I wish you all the best. If you have any doubts regarding the BMX or about the gallbladder, please let me know.

    Hugs

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