It is such a frightening and strange time, waiting for those results and not knowing the extent of the cancer and then, all of a sudden, you do know and the worry starts in earnest.
I would like to try to give you some hope. My husband John was diagnosed four years ago at Xmas time, aged 61, Gleason 10, PSA 25, spread to local nodes and to hip and spine, no soft tissue spread. Well we thought that the grim reaper was knocking on our door and we were so scared. Fast forward to today, latest scans show growth only in the hip, no new lesions and he seems pretty much the same as he was four years ago. Yes we have had some ups and downs and not everyday is a good one, but most are.
If someone had told us four years ago that there would be little change in the bone Mets today, I'd have kissed them.
John has had Zoladex, Casodex and Stillbestrill and is expecting chemo in the near future (in fact it was scheduled to start this month but the head honcho decided to keep it in reserve - a step we don't really agree with on reflection). Anyway, the point is, things haven't changed that much in that time, I'm not saying it's how it will be for you as every man seems to follow a different path, but four years on, we are very happy that he is still with us and still very much the mainstay of the family. We have sacrificed a few things, one of them being the obvious but others are mainly caused by the side effects of the treatment, john has a nice pair of size 40 DDs from the stillbestrill, is often breathless and has limited physical strength after four years with no testosterone. He has a poor memory and has shaky hands and is a bit unsteady. We find this all livable with compared to the alternative.
I hope this hasn't worried you and I'm sorry I haven't answered your question on what to ask, but I wanted to let you know that life can be longer than you think after diagnosis and pretty good too. Also please take a look at the profile of Si-Ness, who also is young and has a high Gleason score plus spread.
Wishing you the best of luck