Thursday, July 8, 2010

Some good news and some "what are they thinking..."

First, the good news:  the FISH test came back HER2 negative. That is what we wanted to hear. Also, I had a discussion with the oncologist about the "weak positive" status of my ER/PR testing and he said...positive is positive so don't worry about it.  OK

Now for the "what are they thinking" part... I have requested from 4 doctors the Oncotype DX testing.  As of today, not a single one of them has complied with my request.  I could just explode!  The oncologist said it would provide no information if the Sentined Nodes are positive.  Yes, I agree.  HOWEVER, if I do chemo first, we'll never know the SN status.  If I do surgery first with SN biopsy and they come out clean, then I will use the onco score to base a decision on chemo.  We discussed my need for this test on Tuesday...thoroughly!  I discussed this test with my breast surgeon's nurse last Friday...thoroughly!  How can they say it doesn't matter???

They're not listening to me.  They are on!  I may fire them!


  1. I'm sorry you are going through all this. I found that when mom was in the hospital we went through this. Different answers, not doing what asked. Gee it's frustrating.

    This is what I found and I don't know if this is something you can do. Again you are the first person with cancer I've known.

    Do you have a GP that is in on this also. I found that moms GP was my central person. My brother found his Kidney person was his central person. That doctor was the one that wrapped thing up so that I wasn't telling different doctors and not getting answers or the right stuff done.


  2. Well at least you have some good news! The Oncotype DX may be something you will just need to pursue with one of the doctors. Perhaps the breast surgeon who got you the appointment with the oncologist needs another follow up call. Sometimes it helps to talk directly to the doctor instead of through the nurses if you can manage to get the doctor to call you back. Tell them you're not proceeding without the test. Do you still have an appointment scheduled with the other oncologist?

    Michelle - You continue to amaze me with the thoroughness of your research and your take charge attitude. You are definitely a force to be reckoned with.