Hello: I am Stage 4 pleomorphic invasive lobular carcinoma, triple negative. HER2 low. Mets to contralateral (other) breast, lungs, retroperitoneum, lymphatic system with cutaneous metastases, which are about 30 nodules on my chest and abdomen, biopsy showed same ILC breast cancer.

Dx of Stage 4 in April 2024. Currently on sacituzumab govitecan "SG" (Trodelvy) infusions. After Dx of Stage 4, started on trastuzumab deruxtecan (Enhertu) but cancer advanced. After 3 months of T Dxd my oncologist switched me to SG. The SG is the only chemo that helped slow the cancer growth.

Original cancer dx was April 2022, stage 3B, despite regular mammos. ILC is often not visible on imaging including PET-CT using the standard FDG (glucose-based) tracer. Had usual neoadjuvant chemo, single mastectomy, 6.5 weeks of radiation. Then Capecitebine up until I was dx stage 4. All treatments were per standard NCCN and ASCO guidelines. However, all were worthless. Waste of time, money and energy. Cancer had already spread, invisible to imaging.

In August 2025 I participated in a clinical trial at UCLA and had a PET-CT using a FAPI tracer. The FAPI tracer "sticks" to the ILC cancer cells where the FDG does not. FAPI is used for other types of difficult-to-image cancers too, although not yet FDA approved. FAPI = Fibroblast Activation Protein Inhibitor. The FAPI PET-CT showed cancer that the standard FDG PET-CT had never revealed.

How do I feel? Tired, very fatigued. Can't live a normal life. Lung tumors inhibit breathing. Pain in lower abdomen, back and flanks. SG chemo causes anemia. Plus the usual unpleasant and gross chemo side effects.

ECOG status = 1.

If I knew at the beginning what I know now, I would have begged for SG as neoadjuvant chemo. The FDA has not approve SG for neo-adjuvant use yet. With SG, I might have had a chance.

Sorry that this is a bit of a downer message. But I hope that this info helps you or others. Let me know if I can provide any other info. Wishing you the best!