Hello jknows:
I also have triple negative invasive lobular carcinoma, diagnosed May 2022, metastatic as of April 2024, mets to lungs, lymphatic system, retroperitoneum and contralateral breast.
Research articles suggest that due to the difficulty of imaging ILC , it has usually spread farther than any PET, CT, mammo or clinical exam will show.
Some research also suggests that neo-adjuvant chemotherapy is not helpful in ILC, i.e. the chemo will not yield anything close to the goal of pCR, or pathological complete response. That was true in my case, no pCR or even close with neo-adjuvant chemo.
The few medical journal articles I have researched suggest that one approach is to skip the usual neo-adjuvant chemo and go directly to sacituzumab govitecan, known as Trodelvy. It is typically used as a third line chemo. I am on Trodelvy and it is the only chemo that has had an effect on reducing/controlling the cancer. Of course the issue will be insurance covering Trodelvy at the neo-adjuvant stage. But I imagine it's no more expensive than the usual neo-adjuvant chemotherapies.
It looks like I can't enter the link to the article...here's the article title that you can use to search: Sacituzumab Govitecan Helps Some Patients With PD-L1-Positive Triple-Negative Breast Cancer Live Longer Without Cancer Progression. May 31, 2025
It appears that there is little research in this area, as there are very, very few cases of ILC triple negative.

An additional option is a FAPi PET scan to get an accurate picture of cancer status. FAPi (Fibroblast Activation Protein inhibitor) is a PET scan tracer that attaches to the fibroblasts on the ILC cancer cells. A FAPi PET scan will show your cancer more accurately than the usual PET scan using the FDG glucose based tracer. ILC and some other cancers do not show up on the common PET scan using the FDG glucose based tracer. In ILC, the glucose tracer does not adhere to the cancer cells, thus the scan result is, well, lousy! There are a few FAPi clinical trials available. You can find the FAPi trials and a great deal of positive research regarding FAPi online.
Here's wishing you the very best!