Aside from replacing the blocked catheter this morning, this is a summary of what we discussed as possible options:
My uro/surgeon and I had a good talk about where I stand, and what are my real options. Based on this latest surgery, he said that he still sees extensive radiation damage in the bladder neck and lower end of my bladder in particular. More evidence to me that the radiation center may have been very wrong about protecting these areas while radiating me with a catheter. But that’s an entirely different issue. He also said that in the 3 months since he had last operated on me opening up the bladder neck, that it had already scar over aprrox 50% in that short a period of time.
The doc now feels that since I am coming up on the 9 month mark post SRT, that a “natural” healing probably isn’t going to take place. While not wanting to rush into anything, he is deeply concerned about my quality of life issues at this point in time. The choices for action seem to follow along these lines of thinking:
First, I could stay long term, even forever on SP catheters. There are patients that have them for 15-20 years, primarily people with severe neuro damage. But that would mean monthly painful cath changes for life, constant risks of UTI, and though rare, possibility of developing bladder cancer. Plus it will still leave me with never ending bladder spasms and the general nuisance of constant catheter care.
Second, we talked again about a first rate reconstructive urinary surgeon from Duke University. Dr. George Weber. It would involve a lengthy and complex surgery, where my existing bladder neck and urethra connections would be taken apart, and then reconstructed. But, the feed back so far, is that with so much radiation damage to those areas, the surgery would be even more risky than normal, and involve up to 10 days in the hospital, a long recovery time, and a high risk of total and perm incontinence, even if the rest of it worked. His general opinion is that any kind of surgery on radiation damage areas is problematic to start with. If it weren’t for the radiation damage, it might be worth investigating further, but that is not the case. The expenses beyond our insurance for having an out of state surgery, and all that it would entail, would be out of sight, even if this made sense.
Third, I could have a urinary diversion surgery known as an ileal conduit surgery. They have been done and perfected for years, and considered the “gold standard” of urinary diversion surgeries. It would take about 3-4 hours of surgery locally, and about 4-5 days in the hospital. It would eliminate any need for catheters forever, low risk of UTIs, no bladder spasms, as the bladder is being bypassed entirely. It is still another form of open surgery, so there would be some longer recovery time. But if done correctly, it would bypass any of the damaged areas for good, and once recovered, I would be able to return to a completely normal life and be able to do anything physical I wanted, i.e. bike riding, swimming, mowing, etc.
For a long term fix, it sounds encouraging, even though I would have to go through another major surgery (though no way as complex as my open Prostate Surgery). Another plus is I would never have to worry about any type of incontinence, ever, and it would eliminate any possibility of future blockages and strictures.
We are going to consult with my wife in 4 weeks, to see what direction we want to go next as I continue to heal from this latest surgery. It will give me a chance to gather other opinions and more time to research what may lie ahead.
David in SC
57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.33rd Biopsy
: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3Open RP:
11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09Path Rpt
: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence: 1 Month ED: Non issue at any point post surgery, no problem post SRT
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one: Aug 3
Latest: 7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped 9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4, Caths #11 and #12 ,Cath #11 - 21 days, Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19