I am not sure if this thread is still active but I am going to try anyway. @kszilvia @kszilvia, I was diagnosed in June 2022, with surgery in August 2022, with Invasive lobular carcinoma, grade 3, pleomorphic with necrosis. I am waiting for my Oncotype, but like you, I found studies that show Oncotype and chemo are effective indicators with lobular, see the below link.

add the w w w to this to et the link. I am new so cannot post links.
.mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html

I had the radioactive seed as well and they said it was for location. I opted for a lumpectomy and am not sure what I will do when I get the Oncotype score.

I see some people had recurrence with chemo, some without, but this kind seems likely to come back.
@schindler, I am so sorry to hear your cancer is metastatic. I don't want to overstep, but was curious if you are willing to share, how long were you cancer free.

I have so many questions and feel so uncertain about so many things. This is so overwhelming.

I did find that Cleveland Clinic is researching as is Sloan Kettering and MD Anderson. I am shocked at how most stand of care for this cancer appears to be lumped with ductal when they are so different and I am so thankful for the research that Mayo, Cleveland, MD, and Sloan are doing. Terrifying that this become resistant to the treatments and equally terrifying how long you have to take them.

Any advice is appreciated.

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