Her2 postive/TN rant

[Faith in Him]

Ok- I know I'm beating a dead horse because things are what they are. But I can't seem to let this one go.

I recently discovered that my orginal dx of hers 2 +++ was determined by Fish only. My loc recurrence was triple negative by Fish and the other test (the name escapes me now). Herceptin did not seem to be effective for me and now I wonder if I really ever was her2+++. Now some would think it crazy that I would want to be her2 + but all of you on this web site understand why. I am so encouraged by all the recent research and the super herceptin trials. On the other hand I don't want to choke down tykerb every day if I'm not positive.

An onc @ UCSf suggested that my masectomy tissue be checked. Only a punch biopsy was checked for receptor status @ recurrence and she feels this was not enough tissue. My current onc will not send it through for more testing. UCSf will not consider me for any trials until they firmly determine my receptor status. So, I'm in limbo on this issue. The onc @ UCSF tried to reassure me that there is a lot of interest in triple negative bc but I can't help but feel a little let down.

Plus I don't want to lose all of you and the knowledge that is on this website.

Tonya