Triple Negative/Not

Am sharing my story in the hope it might help someone else on this topic, and also as a reminder that sometimes blood tests and scan results are not always reliable.



Two years ago my cancer recurred in rib bone and soft tissue (around my implant and in the mediastinum). The original oncologist ordered a rib resection to confirm diagnosis and not only did it show cancer from breast primary, but the ER/PR had transformed to negative, and the Her/2 was negative as well. Second oncologist (the one I ended up going with) ordered the tissue blocks from the hospital and asked his pathologist to re-do the tests and also if he felt he could get a reliable read from the bone tissue. Answers to both were yes, and triple negative was again confirmed. After two years of chemo (with three months of Femara in between because my oncologist felt my cancer was presenting more like a ER+ however, markers went up very slowly and there was some disease progression) I had two "hot" axillary nodes removed a month ago. Guess what? Results came back ER+ (98%) - still PR- and Her2-. Am beyond confused. I know bone tissue is hard to diagnose, but two labs thought they could. I queried if this could be a second cancer, but after MRI and PET and CT scans all showed no evidence of cancer in the other breast where the axillary nodes were, the conclusion was this was part of the recurrent cancer tissue.



So now I am on faslodex. Won't know if that's working for three months. I also had a chemo-sensitivity assay done on the same tissue and according to this (controversial to some) test my cancer is resistant to 17 out of 20 drugs. This is very depressing.



Has anyone ever had anything like this happen?