Like a previous poster, I am all at sea. I'm a T3B, Gleason 6, extra-capsular, but no spread so far. I previously had an NHS surgical consultant as I was thinking about surgery and he was brilliant. The most helpful, knowledgeable chap you could wish for. I decided to go for IMRT and HT instead because of previous surgical complications, but the new NHS consultant is the invisible man.
I've had just two Prostap quarterlies with the usual horrible but bearable hot flushes, dizziness, and no decrease in the number of times I get up for a pee at night, with no monitoring whatsoever.
My urology nurse tells me that the consultant doesn't think PSA, Testosterone tests or an MRI are necessary prior to radiotherapy that will blast my prostate, seminal vesicles, lymph nodes and possibly bladder and back passage as collateral damage. I have arranged PSA and Testosterone tests with my GP without the help of the consultant and both show a reduction. PSA 2.00 from 16, Testosterone 0.03 from 15. He is also against the SpaceOAR bowel spacer for no good reason I can surmise, just 'We don't do it' (from his secretary), but I will not have radiotherapy without it, having seen a friend gain lifetime back passage problems due to apparently casual irradiation.
Still no direct contact with the invisible man.
It feels like a conveyor belt and I am seriously thinking about climbing off and letting what might be, be. Looks a tad melodramatic now I write it down, but that is where I find myself. It seems illogical not to monitor every PC patient in order to decide what might and might not be irradiated without resorting to blanket coverage.
Alternatively, does anybody think it worthwhile changing my hospital and therefore my consultant? Or is everywhere as bad? Time is getting short.
Jonno
