Just got back from my 2 week checkup with my uro/surgeon after my last corrective surgery. He told me to stop the daily 'tests" blocking off the catheter for at least a full week, to give it a chance to heal some more. Then next Monday, try a single test ,if it still causes so much pain, cease testing. I also scheduled my 2nd post Radiation PSA test with him on April 6th.
We spent a full 30 minutes together. He never rushes me. Gave him a full typed page update that he read before we even spoke.
He still strongly feels that all the stricture issues now have been made worse from the salvage radiation. Even though it ended over 3 months ago, he said it can take 9 months, a year, or sometimes even more to heal, and sometimes it never does. The radiation has just complicated an already complicated situation.
In two weeks, under heavy sedation again, he said he needs to look with the scope, he said during the last surgery, he opened me a lot, and he needs to know what reduction has taken place during this time. He promised to abort instantly if I am too sore when I see him, and/or if the pain level is too high if he attempts.
We talked about beyond this point, and there is no easy answer. He is in contact with Chief of Urology, Dr. George Webster, Duke University (hope that is a big enough brand name for some), he specializes in advanced stricture operatons, including the very complex urethra/bladder neck re-building ops. They are risky and probmatic even on a good day. My own surgeon said that he did not have the skill set or experience to attempt one (how's that for honesty). He said I would have to meet strict criteria for the op, and due to radiation damage to the surrounding areas, very well might be disqualified as being too risky.
If that couldn't be done, then instead of a perm catheter, even the SP I have now, they could do another op, less risky ,but in the end, they reconstruct something out of a piece of my colon or intenstine, and it exits the body and urinate into a disposable bag, much like a colestomy but for urine instead of feces. Nice prospect. But even then, he said that the radiation damage extends even to the digestive systems, and they might not be able to do that safely either.
(Bottom line: it's just like my uro/surgeon said from the earliest days, surgeries after radiation are bad news. We think here at HW in terms of salvage surgery being a bad idea for failed radiation treatment as a primary treatment, what he is saying, is that heavy radiation does perm. damage to the surrounding areas, making any kind of surgery difficult at best - something to think about - new guys) He still feels that getting 72 gys as a salvage dose in such a narrow/deep area such as I have, was a bit on the strong side as a secondary treatment, that it was bound to be probmatic now.
The other option, is to just leave the SP (suprapubic) catheter in long term or perm. He was visiting with a patient recently that has had one in place for 29 years continuous without any major problems. They do change them once a month to keep down infections (UTI). At 57, I would hate to think even that option, to live with a lifetime cath and deal with spasms all the time.
My uro/surgeon said not to give up hope on the current methodology that he has been attempting, he's hoping that when/if the bladder neck area can heal enough and cease swelling so much, that the openings he has made should, in theory work, or be workable.
I left kind of emotionally shaken, this morning's testing left me so sore it hurt to walk. Least I will get a break from that. So, to my pal Subic Squid in particular (I am so hoping your last fix fixes you).
If any of you have any first hand knowledge/experience with this doctor from Duke, would love to hear an opinion.
David in SC
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