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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: Mar 10 10:12pm | Replies (344)

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@alias

I was diagnosed with ILC 3 months ago. Tumor was nearly 7cm. at largest dimension, ER+, PR+, HER2 -, stage 2A, grade 2, KI 67 1-4% (depending on tissue sampled), no genetic markers or family history.
I had a total mastectomy with axillary lymph node dissection 2 months ago. 2 out of 18 nodes had evidence of cancer but cancer contained in nodes.
I was told by one oncologist that IV chemotherapy was a “no brainer” for my age and presentation of cancer. Another one told me that for lobular with such low KI 67 it would only be 5% beneficial as per the MonarchE study. Instead radiation, oral chemo (verzenio), Tamoxifen and Zolodex were recommended.
I’m wondering how others have made this decision? I am experiencing terrible anxiety and difficulty making these decisions.
So grateful to all of you for sharing here.

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Replies to "I was diagnosed with ILC 3 months ago. Tumor was nearly 7cm. at largest dimension, ER+,..."

Hi there. Dxed with Stage IIIc ILC (5 tumors, 10/16 diseased nodes -- diagnosis upon surgical pathology). Even the team didn't know how advanced it was going in -- I had no symptoms of bc, so I was really surprised. I had had annual mammograms with ultrasounds included. This was Feb. 2019., at age 69. Presently NED, and feeling great! You ask about the treatments: 4 mos. dose dense chemo (AC and Taxol). 6 weeks radiation, 5 days a week. 3 years Zometa infusions, every 6 mos. 2 years Tamoxifen, which I changed to 8-10 years Anastrozole based on a second opinion. I mention all these details to outline some thoughts to share: I pushed for surgery asap (ended up being modified radical mastectomy, clear margins). I did all the treatments on schedule as quickly and compactly as possible (because this does matter). I got a second opinion at a nearby cancer hospital (as opposed to just using the opinions in our local "cottage" hospital). I interviewed 2 surgeons for the job, and got the best one. Used a porta-cath instead of IV infusions (just had that out 2 days ago). Kept working throughout (this was important to keep up energy) and tried to be as upbeat as possible. I wish for you the very best, and feel free to question me if you wish!