Hello mjorskir:
I don't know your stage or HR/HER2 status so I will share my status.
I am ILC triple negative. Dx in May 2022 as stage 3B. At the time the doctor stated that she believed I had more cancer and was a higher stage than her clinical exam or imaging revealed. I started with neo-adjuvant chemo + pembrolizumab, then mastectomy, then 33 sessions of radiation. The neo-adjuvant chemo did very little to the large tumor that had sprung up in my breast.
After radiation I was on capecitabine as an adjuvant (post mastectomy) chemo.
By April 2024 I was metastatic with mets to lungs, lymphatic system, retroperitoneum. Now I am on sacituzumab govitecan (Trodelvy). It is for metastatic triple negative breast cancer. It is the only chemo that has apparently stopped cancer growth so far.
ILC is tricky because it grows as very thin lines or strands. These can be difficult if not impossible to see on imaging. Eventually the strands group together and form a tumor but by that point the cancer has been growing and spreading insidiously for some time.
If the cancer has spread to the lymph nodes, it has probably spread more to than your breast and lymph nodes. I am sorry to say that. I am not a medical person, but that is what I have read in medical journal articles.
You may wish to research the NCCN guidelines regarding ILC treatment. These are available online. These will be the guidelines that your doctor follows--they are the 'bible' for cancer treatment. The NCCN guidelines for ILC are the same as for certain other breast cancers as there is insufficient research on ILC to establish its own set of NCCN treatment guidelines. The lack of NCCN treatment guidelines specifically for ILC is one of the problems.
Immunotherapy, such as pembrolizumab, seems to have helpful results. That is an immunotherapy, not a chemo. Your oncologist likely will want to include it in your treatment.
If you are HR or HER2 positive you have more treatment options.
Do your research, read medical journal articles (available free online), prep some serious questions for your doctor. Everyone is different and my situation may not be applicable to you. I wish you the very best in these tough decisions.