MeierEce,

When I met with my DF doctors, it was apparant that 1)they were incredibly busy and 2)one of the doctors was incredibly bored by my questions. Normally I feel bad asking questions of doctors knowing how busy they are. This time, though, I knew the answers would (in your case only could and I pray it turns out a-okay for you) change my life, I couldn't care less about their schedules/boredom. They even told me the finger exams, CTs, etc. was incredibly underwhelming!!

Didn't matter to me, and it shouldn't matter to you. Beat down those doors and demand ANSWERS and RESPECT. They were answering every last questions I had. I was a split second from looking at bored Doogy and saying "Excuse me, but if you're bored. There's the door. Use it." To this day I still regret not saying it.

And their "underwhelmed" feeling dissipated when the second surgery turned up a lot more cancer their "finger exams, CT, etc." didn't show.

And ask for anything they've got. PET Scans, CTs, needle biopsies, whatever. You can bring those to the different docs to review. Like I mentioned - my scans/xrays showed zippo but the second surgery turned up a bunch. I personally don't think any non-majorly invasive test is overdoing it.

GO GETTUM!

Sabrina