Anyone else with Invasive Lobular Cancer TRIPLE NEGATIVE?

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Krissy37
Krissy37 Member Posts: 291
edited December 2017 in Triple-Negative Breast Cancer

Had my appointment last week with my surgeon oncologist. This is my second cancer in 10 years. First had DCIS, lumpectomy and rads. No tamoxifen . I was told this is a new cancer not a reoccurrence. The tumor shows 2cm on ultrasound at 1:00 position higher up on chest wall, she doesn't feel it has grown into the chest muscle. I'm waiting on a CT scan to check for staging, and a bone scan too. upon physical exam my lymph nodes didn't appear swollen and said she didn't feel anything in my armpit . I am choosing a double MX , rather than a single MX with immediate reconstruction , waiting on an appointment with a plastic surgeon. My mom also had cancer at my age now at 47. She's still living. She had Paget's disease and DCIS. I will have genetic testing at a later time.

My pathology showed ER + ( but 1-3% Weak stain) PR- HER2- so for now I am being treated as triple negative unless final surgical path shows otherwise. Grade 2 (7/9) on grade scale.

I'm looking for anyone that has any info on this...or has had this diagnosis? From what I have read this is a RARE cancer, being ilc triple negative?? And idc responds responds more favorably to chemo than ilc? I was quite shocked that I am being considered triple negative, it was a surprise I was not expecting .... i thought any ER + number mattered? Again, dr said stats can change after surgery that I will have in about 3 weeks. I'm extremely worried this time around.

Thanks for listening. I noticed a lot of you ladies are IDC Triple negative.

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  • Krissy37
    Krissy37 Member Posts: 291
    edited December 2017

    Bump

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  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited December 2017

    Hi, Krissy - I am sorry to hear about your new breast cancer. This is nothing anyone should have to go through.

    I have a mix of ILC and IDC TN cancer cells in my breast tumor.

    My original core biopsy showed ILC, triple negative. My oncologist felt that it was unusual enough to order another core biopsy. The second biopsy's pathology came back reporting TN IDC. Then they went back to the original samples which were restained and tested and TN ILC confirmed. My MO explained it was a mix of ILC and IDC and the thing to concentrate on was that it was invasive triple negative which responds well to chemo.

    I am doing neoadjuvant chemo now and it's been very successful as far as shrinking my very large original tumor.

    Sorry I can't speak to the ER numbers. I was a 0 in both biopsies.

    Best of luck with your treatment.


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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited December 2017

    My mom was ILC/triple negative. 10 years out after lump/rads/4 rounds chemo. She's doing really well.

    (I'm ILC, too, but ER/PR+.)

    Good luck with treatment. It gets easier, I promise, with a plan in place and more knowledge. Somehow...it just does.

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  • Krissy37
    Krissy37 Member Posts: 291
    edited December 2017

    AgathaNYC-

    I'm thankful for you ladies sharing your stats and experiences and it's some comfort to see other ILC. TN diagnosis. I'm sorry you are facing BC too. My surgeon wants to do surgery first as right now the tumor is 2 cm so chemo will be given after healing from the mastectomy. However, I have my CT full body scan this Sunday and bone scan Wednesday. I meet with my surgeon again this week. If there are unexpected things seen on the scan - then the plan may change.

    Did you have any lymph node involvement? How are you handling chemo so far?

    I will come back and post after this week when I get my scans back and update my profile. Hope you can find a way to enjoying the holidays some....It's been rough for me.


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  • Krissy37
    Krissy37 Member Posts: 291
    edited December 2017

    EastcoastTS- thank you for sharing your story with me. I'm so happy your mom is doing so well! You both had ILC. Did you get a genetic test done? I plan on having one done as my mom and I both had cancer and I have a teenage daughter to think about and my sister will be 40 this year.

    Did your mom have any immunity treatment offered to her after chemo? I vaguely remember my surgeon mentioning that as an option , but haven't really researched it yet. Everything right now is so overwhelming.

    I've read on the boards things get easier with a plan...I just feel like this whole process is taking too long to get started. It worries me.

    When I look back at my DCIS experience ten years ago... I was mentally prepared as I only had to do a lumpectomy and rads was a breeze for me. Little rough with the boosts- but I tolerated treatment well.

    Invasive and chemotherapy this time around...and a mastectomy....I can't mentally grasp this yet. I know lots of women make it ... praying I can too

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited December 2017

    Krissy:

    She had only BRCA panel done (but this was ten years ago and a bit smaller panel offered then). Negative. For me, I had BRCA +++ all the stuff they check for now. All negative.

    However, I have read on this board somewhere that ILC may be related to prostate. Search and maybe you'll find the discussions. My grandfather, multiple brothers of his and my uncle on mom's side had prostate. Although I'm not sure how many MOs even know this (they don't all know that much about ILC versus IDC). So I think there is a connection/gene that they have not located yet. I mean, how odd for us both to have the same cancer? I think it's odd.

    She had nothing offered after chemo -- but again -- they've made so many strides with TN in the past few years. When she was diagnosed, there was not as much research being done for TN.

    You will make it and get through it. I have to tell you, this past year with surgeries and all the doctors appts and all that -- it's been a blur -- but somehow, I got through it. You will, too!!! The BMX was doable. Not great but doable. Read all the how-to-prepare surgery lists here. I found those so helpful. I was terribly prepared.

    Good luck and know that you're not alone out there with this.

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