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Quite a few doctors are not aware that ERPR and HER2 can change...
Chemotherapy or even hormonal therapy could be a cause for the changes. There isn't broad understanding of what really does what, which is why I am somewhat hesitant to even start on a SERM or an aromatase inhibitor.
I am NED now, after chemotherapy. So theoretically if I use a SERM like tamoxifen, and it changes some of the characteristics that are favorable (like being ER+PR+), and I have recurrence/METS, it could mean I would be in a worse position with a recurrence than I was without using the SERM (or the aromatase inhibitor, or the Herceptin).
There is so much that they don't know. And in my opinion it is because women have not collectively found a way to build a common database that follows them from diagnosis to whatever they die from (including secondary causes that originated with cancer). If we all were part of that database on a consistent basis that showed what medications or alternatives we use or what treatments we got and didn't get, we would know a lot more...
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