Hi! I can completely relate to your situation. I was diagnosed with lobular cancer in September and underwent a bilateral mastectomy in November. During the risk-benefit discussion regarding chemotherapy, I was told that I had only a 1% benefit from chemotherapy and that the oncologist's team only recommends proceeding if the benefit is at least 3%. This made my decision quite challenging.
The 1% figure is generated based on breast cancer in general, which often focuses more on ductal rather than lobular cancer, and it doesn't take my tumor's unique biological characteristics into account. I was also informed that it was unlikely my small tumor would have spread to my lymph nodes, yet one was involved, which surprised the medical team.
I didn't want to dismiss chemotherapy without fully understanding my options, so my surgeon suggested the Oncotype DX test. Unfortunately, I do not believe I will get any rebate from Medicare, but I plan to look into this further. The test cost me $5,000, and I'm currently awaiting the results. I'm feeling very torn; on one hand, I want to avoid chemotherapy if it's unnecessary, but on the other, what if I am in that 1% who would benefit?
Thank you for sharing your experience; it helps to know I'm not alone in this. I wish you clarity and strength as you navigate your own decisions! I would love to hear how you progress with your decision and results. I will also happily share mine when I receive them which I am hoping is before the 22nd January which is when the oncologists want me to start treatment whether it be chemo or straight to radiation.