I was ER-, now I'm ER+!

[KristinSchwick]

Got a call from my oncologist's nurse today, she informed me that they dug up my old lymph node tissue specimens and tested them for ER status. My onc had some suspicion that my isolated bone mets were behaving more like ER+ tumors, but the original tumor (in the breast) was ER-, way back when. He decided to test the lymph nodes and lo and behold- the cancer there is ER. To me this is huge, this is hope and I feel this is answered prayers.

He said that he'd been in oncology for a long time, and rarely gets this fired up about something- he thinks we may just have this "tiger by the tail", in his words. Course, we didn't test the current bone mets and its been a year since those lymph nodes were in my body, but there is hope that blocking estrogen now could buy me some time and maybe even more. So going to continue on Tykerb, Herceptin, Xgeva and now add Zoladex and Femara to the mix. Maybe down the road I will have surgery to remove my ovaries, but not this month.

How could this happen??? Doc thinks that there were two cancers in the breast initially, and the ER+ one metastatsized to the lymph nodes and then to the bones, and the ER- one completely responded to the neoadjuvant chemotherapies (FEC, Herceptin, Paclitaxol) and was reduced to stage I/DCIS. It is also entirely possible that the first testing gave a false negative, or the tech and pathologist were drunk- but doc assured me that the pathologist is excellent (same guy both times).

I am so thankful for this renewed hope. I really feel for everyone else fighting and hope that my sharing this story will inspire others to inquire about changes in receptor status.

Somethings to think about:
ER/PR false negatives DO happen! Just google the frequency. I'm sure the same is true for Her-2 status.

My cancer was not behaving like typical ER-, Her-2 cancer: it was limited to only bones, grew very slowly and hadn't spread to any other organs. This was a red flag to my doc as it was not behaving like ER- disease, and more like ER+. If your cancer isn't following the anticipated trend- maybe its not what the doctor's think-ask!

The ER/PR staining procedure- is a qualitative assay, meaning someone looks at a control tissue slide, looks at your tissue slides and then asks himself, is this one significantly darker than the control? I have done these assays during my PhD research, and it is very subject to human error and human bias. It depends on how many washes the slides got, how long the tissue was fixed, how long were they blocked to prevent excessive background staining, how well the positive and negative controls worked.

Much love and Huggs going out to all of you!!!