Thanks for all the responses. If nothing else this has has given me more questions to get answers to.
I hope to have better/more complete information by the end of this week.
To answer some of the questions (and I will need to triple check this is correct at my next appt):
1) I had a MpMRI - no idea of resolution or PARIDS score (or what that is, so I'll look that up!)
2) After this, all I know was there was an area that gave cause for concern and I was referred for a targeted TRUS biopsy.
3) During the biopsy they took 6 cores from the RHS of the gland (where there was no suspected issue) - this gave Gleason 3+3. I core positive for cancer, < 5% by volume. LHS (the suspicious side) they took 7 cores. 6 positive with GS of 3+4. 50% cancer by volume of which 5% Gleason 4 - I need to check if this is 5% of the whole core or 5% of the 50%....ie 2.5% of the whole core.
4) When I was given the results I asked for a copy of the pathology report but was told they are not routinely given to patients - I will be asking again during this week's appt.
My thoughts are the RHS is relatively indolent and AS would be appropriate. The LHS is mostly 3+3 with a marginal amount of 4...so again wondering if actually AS would be fine...
One question is whether it's worth getting the biopsy validated somewhere else and where the appropriate place to do that would be?
I had kind of started to come around to the idea of surgery, but when I started to examine the definition of "continent" *(1 or 2 pads a day) and "no ED" (yes, you'll likely have ED unless you use pills/injections/Vacuum pumps/implants) I started to think about whether I really wanted to live for the next 10/20/more? years having to deal with that. + the fact that recurrence is still a possibility.
Also wondered about HIFU - it's not been offered and I don't know if my cancer would be a candidate. I do have some private cover through work, so thinking about exploring that as a non invasive delaying tactic. So therefore, in order of preference, I think: AS, HIFU, Brachy, EBRT, Surgery.
I'm torn between taking the most aggressive measures to try to get rid of this vs taking agressive measures if the cancer is deemed aggressive and less aggressive measures if it isn't - with the thought to buy some time until the research/treatments progress a bit. The logic of ripping out the entire prostate just seems questionable to me - why not just remove everything from the pelvis down to be sure?! And why have they got to remove a chunk of urethra? - surely if it can be left undamaged with a TURP, the same could be done during a RP??
On the other hand, hoping the bone scan is clear and that this whole discussion isn't moot :(
Lot's to ponder, but appreciating the insights