Posted 2/23/2016 6:43 PM (GMT -8)
Sorry for the delayed update. I was expecting a good fight, but it never happened. I did hand the nurse a 2 page typed update from me. The doctor did read it, and then proceeded to spend 30 minutes calmly with me, taking the time to explain my situation, and to try to ease my concerns.
On the dripping issue, he said the culture came back with a really rare infection, one he had never seen before. I failed to write the name of it down. He is not certain why its going on, and it has to be limited to where my bladder neck is scarred closed, to the tip. There is no way anything can get past the blockage. He put me on an even stronger anti-biotic for the next 7 days, and hopes it has some positive effect. If it doesn't work, and I dread the thought, he said I may have to be circumcised. No male in my side of the family as ever been circumcised, going back to my grandfather. He said he will only do it, while the patient is completely put under. Said it would take 25-40 minutes. Would leave about 24 self dissolving sutures. He admitted, that it could be a pretty painful recovery, but the worse should be over in about 2 weeks. Hoping and praying it doesn't come down to this.
On the internal pain in my scrotum, loins, base of penis, etc. - he's not certain enough to dx. at this point. Said it could be still another deep infection, though he kind of discounted that. Or it could be fluid building up in my by-passed bladder, or it could be bladder cancer. As noted before, there is no easy or safe way, with all the radiation damage, for him to access my bladder. Said the risk of it not healing properly is high. Admitted that under present circumstances, I could have stage IV bladder cancer and never know until it spread. So for starters, he's going to run several contrasted CAT scans this Friday, and take it from there. Said even exploratory surgery from the outside in, could be very problematic. I asked him point blank, when didn't he take the bladder out back in 2010, when he had the chance. Said it was a judgment call on his part, he reasoned that there were high risks even six years ago, and that it only riskier now.
On my rising PSA, said the next 2 readings may be the determining tests. I didn't mention any preference at all for the next step, but he immediately recommended the possibility of 2-3 rounds of chemo, Taxotere (?) vs. HT. His PSA reading from last week, matched both the VA's and my own oncologist's readings. I will be getting a new one mid-March, to see if the rise is still increasing or not. Jury is out on that one too.
He has been my urologist for coming up on 9 years now, I still feel he's a good doctor, not perfect, and he did agree, knowing now how things have turned out, perhaps the bladder should have been removed. He told me he assisted a removal just a couple of weeks ago, with another patient who he said was about as badly damaged as I am from radiation. Took them 6 1/2 hours, and there were many complications. The guy ended up with both an Urostomy and a colostomy. I already have the one, and sure don't want the other. There will be no rush into major surgery - either by me or by my doctor. Going to proceed with caution.
So no firm dx. on anything, not quite yet. But hopefully nearer than I was. He did appear to be very empathetic for the coming up on 6 years of 24/7 moderate to severe chronic pain. He told me, unfortunately, that I may not have seen the worse of the radiation damage. Said that it may get even worse as it spreads, even though I am coming up on the 7 year mark from SRT. That prospect didn't go over well with me, but I would rather know the truth.
Will update again after I get the scan results, and see what this new rounds of meds do for me.