Just diagnosed 2 days ago

RenoNV
RenoNV Member Posts: 14
edited May 2018 in ILC (Invasive Lobular Carcinoma)

Received the ILC diagnosis 2 days ago... Still in the shock faze but slowly coming out and realizing it is actually me with this dx if that makes sense .. I don't know much about ILC except for what I googled and it was to overwhelming and I had to stop ... My BS is still waiting for all the final path reports from my biopsy 3 days ago so I don't have an appointment until May 23 .. I have been on the newly diagnosed page and was overwhelming with all the hugs and support .. Anyone who can offer any info on ILC I would appreciate it ❤️

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited May 2018

    Hi there Reno. Lots of us here have ILC, and while there are interesting differences, the treatment plan is much the same as it is for our IDC sisters. You will certainly find that this is a great place to get emotional support; many of us are the "rock" of our families and have no place to vent our fears except here. Let us know how we can help ypu.

    In my case I had two tumors close to each other; the second found only on MRI. I went the lumpectomy + radiation route and all went fine after the initial shock of the diagnosis.

    Best wishes to you.

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    Welcome, Reno, and my sincere condolences. (((Hugs)))

    Yes, it is a terrible shock, being diagnosed. You are going to feel much better when you have a treatment plan. I assure you, you have lots of good times ahead.

    You are never alone here at BCO.

    Here is a likely helpful discussion thread from our ILC discussions section. Also look through the other content linked therein.

    https://community.breastcancer.org/forum/71/topics/862161?page=1#

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    Here are some items relating to the challenges and limitations in detecting ILC by most medical imaging.

    https://www.ajronline.org/doi/10.2214/AJR.07.3827

    https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-015-0605-0

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  • RenoNV
    RenoNV Member Posts: 14
    edited May 2018

    Thank you both for your responses and the links ... Seeing my BS on 5/23 .. All I know right now is ER/PR positive HER2 negative and from what I have read that is a good thing ? The waiting right now has definitely put my stress level over the top .. My brain seems to only function half the time and having a hard time looking down the road ... My husband and I still enjoy being with our kids and grandkids but the C word always rears its ugly head in my brain late at night ... I'm hoping it will lessen since it's only been a week .. Sorry for the rant .. just trying to adjust .. ❤️

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    yes RenoNV, er and pr postive means hormone therapy may be effective in treating your cancer. Which is a good thing. More treatment optiins.

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  • beach2beach
    beach2beach Member Posts: 996
    edited May 2018

    Hi RenoNV, there's only so long we can stay occupied by other things, then when we finally feel we will pass out to sleep from exhaustion, the thoughts of what is going on come out full force. Glad you are keeping occupied, one of the best things you can do until you have your appt. I googled , of course, and made myself nuts and I didn't even know I had ILC until after surgery. Biopsy they had identified it as IDC but after my mastectomy it was changed to ILC. So I was thinking I had one thing, only to find out I had another. It didn't change my treatment, I had surgery, Oncotype test which came back low enough so no chemo, needed no rads either. I currently take Tamoxifen and it's doable.

    The only thing I learned about ILC was that since during surgery they though it was IDC and I had sentinel node biopsy, they took it out, checked it and said they were clear. After pathology on the tumor and it was discovered it was ILC they had to re-stain the nodes. My surgeon told me they do a special staining on nodes with a ILC dx because they way it can, lack of a better word, hide. Took an extra 2days to get that news that it was clear.

    Keep us posted. :)

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  • RenoNV
    RenoNV Member Posts: 14
    edited May 2018

    Hi beach2beach ..Thank you so much for all your information .. and you are right .. I've been down the Google road and eventually my brain shuts down .. I had an appointment with my BS this past Wednesday and was overwhelmed with all the info and options .. At my age 66, I told her I was thinking of a double mastectomy mostly because I don't want this black shadow over my head nor do I want go thru the amount of stress/ anxiety following up with diagnostic mammograms etc every 6 months and wondering when the next show will fall ... She presented all the data and percentages of ILC going to the other breast as well as other organs ... In the end she of course said it is ultimately my decision and will do whatever I decide .. This is of course is the hard part .. especially if/when lymph nodes are involved and how aggressive I want her to be. ... After our 2 hour consult I had gone in 100% double mastectomy with immediate reconstruction ... I understand if lymph nodes are positive radiation comes in to play with sometimes not favorable results if you had breast reconstruction .. I was wondering if anyone can give feedback on this .. She ordered a breast MRI for the next day ... Mostly I guess to see the size of this area as I don't have a "tumor/lump" and if there is anything detected in the other breast ... I'm still feeling the double mastectomy is right for me ...but the lymph node involvement makes me second guess ? ILC seems to be a tricky kind of animal


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