Hi Connie,
Just a thought here, from my own experience....
When my bladder cancer was first dx'd - I got the path report from the Dr and he "explained" it to me ( it was T2 grade 3 on the report.). However, I called the pathologist to ask about how sure she was of the stage and grade. She then explained she was certain of the grade3 micropapillary, but it was staged at stage 2 only because she exhausted the material. At cystectomy it was actually stage 3A. Please don't think I am trying to say your case is understaged like that, what I am saying is that the pathologist can explain more than the dr can about how the path report actually is. That make sense?
Best wishes to you, I think it is good you are your own best advocate, Holly