Sorry you're having this grim period in your life (especially with Christmas etc looming)
You may find the doc is simply reluctant to give too much info to the person that is not the patient. (I don't want to sound trivial, but if you think of it the other way round and it was you being treated by a gynaecologist, then that doc would be reluctant to pass on your details to your dad)
If, however, even your dad (Barry) does not know what his PSA is, then I would find that a little odd. The uro should however be reporting back all his findings etc to your dad's GP so it should be possible to get some answers from the GP too. (If he's had the same GP for a while it may be a double-edged sword in that he may be at ease discussing stuff with him/her, or he may know him/her too well for something this heavy)
Also being in the UK, you are dealing with the historic way that NHS/UK doctors have treated patient's notes: a mind set that is basically that the patient shouldn't get to see stuff they won't understand. (I say that, even though my dad was a doctor). In the States and here in Holland they are more used to the idea that patients want information, plus the idea that patients would like to be able to decide what they want to do rather than simply get told what is going to happen by the doctor. For instance, my uro gave me copies of the original lab reports before I even asked for them, he also suggested I went away and investigated the options and then came back and told him what I wanted to do
As for the state of the Cancer, well on the basis of your initial posts about
how bad it was, I don't think the Gleason 9 makes it any worse. In fact you could see the fact that it wasn't a 10 as a glimmer of light.
I'm no expert, but in my opinion:
I think that with things the way they are surgery is not likely to be the way to proceed, so the oncologist/radiologist are probably the people to tackle it not surgeons. (urologists are nearly all surgeons). What it boils down to is that because the cancer has already "escaped" surgery to remove the prostate will/can not stop it spreading, and all it will do is leave your dad with a whole bunch of side effects without any benefits from the surgery.
Chemicals (hormones etc) can suppress the cancer, to slow down the rate of growth; a regular session of radiation aimed at the prostate can shrink the cancer there. If mets start causing pain in the bones, then small doses of radiation can help deal with that.
If your dad is having, or starts to have trouble peeing, because the prostate or the cancer is pressing against the urethra, then there might be a need for some (minor) surgery to relieve that.
I think it will also be better to pay more attention to the tips from the guys with Gleason 9s than those from me.
All the best to you and Barry
Born Jun ‘60
Apr 09 PSA 8.6
Biop 2 of 12 pos
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
14 Sep 10 PSA <0.1
Post Edited (English Alf) : 11/21/2010 2:01:33 AM (GMT-7)