Thanks, Lani, for remembering those of us who are struggling with this question.
Joannie, because there is this group of us that were somehow considered at enough danger to need chemotherapy but not at enough danger to be included in the Herceptin trial (!????!), as you know we are left somewhere in the Outer Limits...!
The "system" for categorizing who gets what therapy is having a hard time catching up with the information that expanded with computers, internet contact between different scientific endeavors, the Human Genome Project, etc. I keep wondering when the NCCN guidelines are going to change so that we all don't continue to get swept away to treatment based on the 1 cm guideline for chemo, now that it is clearer that it doesn't fit as well as things like genetic tests.
The guidelines are what put us at "high risk but how high"? but each of our tumors have more tumor characteristics that aren't part of the guidelines, so making a judgement call might include those kinds of things. (For example, BRCA positivity.)
Take a look at the basic guidelines and then think of any characteristics of your particular tumor in addition to those guidelines. :
http://www.nccn.org/patients/patient.../3_work-up.asp
But what I keep wondering is why there doesn't seem to be any info on doing the genetic tests on our tumors in retrospect to help us get a better handle on our risk. Lani? Becky? Macmaze?
AlaskaAngel