Hello Maggiejinx:
I am pleomorphic invasive lobular carcinoma, triple negative. Dx in May 2022 as grade 3B. My oncologist noted in the report at the time of diagnosis that she believed I had more cancer than could be determined clinically or via imaging because it was ILC. Had neoadjuvant chemo which did very, very little to shrink the tumor. Single right-side mastectomy in Nov. 2022. Clear margins and 5 of 5 lymph nodes were positive. 33 sessions of radiation with booster after mastectomy. Capecitabine after surgery until April 2024.
In April 2024, pleomorphic invasive lobular carcinoma found in left breast. Also in a small node on my collarbone. Several tumors found in my lungs. Cancer in my retroperitoneum. The cancer was on the outside of the ureters, squeezing them closed. That caused 3B chronic kidney disease. I now have metal stents in both ureters as a result.
I tried Enhertu (for HER2-low metastatic cancer) for 3 months but the cancer grew. Now I am on Trodelvy (sacituzumab govitecan or "SG") for metastatic triple negative cancer. The SG is the only chemo that has reduced/paused the cancer.
If I knew then what I know now, I would have begged for SG at the time of diagnosis.
The challenge with ILC is how it spreads. Due to the web-like or thread-like nature of it, it is difficult to image (PET, CT, etc.) until the threads meet up and form a tumor. Then it's too late. This is info I have found by reading medical journal articles. There isn't any imaging (MRI, PET, CT, etc.) that does a good job to discern ILC.
ILC triple negative (what I have, I don't know your ER, PR or HER-2 status) is a rare combo, less that 1% of all breast cancers. ILC with hormone/HER2 expression is only a bit more common.
Based on my experience, I urge you to consider all potential treatments. Become very educated. Have a frank discussion with your oncologist. For more info, you can google info about ILC and your hormone and HER2 status. It was helpful to me to read medical journal articles, all free online via your search engine.
Finally, there are a few clinical trials for FAPi. FAPi is Fibroblast Activation Protein inhibitor. It is a type of tracer being studied for hard-to-image cancers, like ILC. The tracer now used for PET-CT imaging is FDG, which is glucose based. But the glucose tracer does not 'stick' to ILC cells so the cancer doesn't show up on imaging. Instead, the FAPi tracer sticks to the fibroblasts on the ILC and other hard-to-image cancer cells giving a good picture of the cancer's location.
To my knowledge there are FAPi clinical trials at UCLA, UCSF and Mayo. There may be more locations, those are merely the clinical trials I know of. Not all accept breast cancer patients at present. Search online for more info. If you get into a FAPi trial, at least you'll have a better idea of where the cancer is located, leading to more effective treatment.
Also you may wish to check into ASCENT05.com, a trial for patients at high risk of cancer spreading after neo- adjuvant chemo and recent mastectomy.
If I can clarify anything or answer questions, please let me know. Here's wishing you the very best!