Posted 11/2/2012 12:09 AM (GMT 0)
Alf,
Thank you for the full post on this subject. I am in an unusual situation. The radiation from the SRT is what heavily damaged my bladder and bladder neck in the first place. Even when strictures weren't an issue (and they often were), I could not urinate the natural way without severe pain (and I mean level 8-10 pain from all the burn damage inside my bladder).
If you remember my story, my uro and I tried for nearly a year to allow natural healng to the damaged parts. It never happened. Actually, as each month passed, the pain became worse. Every 4 weeks, he had to change out the suprapubic catheter for sanitary reasons. Normally, it would be a pain-free event that would take 2-3 minutes. With all the damage, it was like someone pulling out a rusty piece of barb wire fence out of the hole. Then the uro only had 2-3 minutes to insert the new tube, because the walls of the bladder are so strong, that it can close up the opening for good where the tube passes through the bladder. The insertions were so painful, that sometimes the nurse and another person had to hold down my arms, and I was left in trauma and tears on the table. This was just to get a new tube in.
So in the end, I either had to consent to being on the suprapubic cath for life, or consent to the Ileal Conduit Surgery. I chose the later, though it was a hard desicion to make - with a long surgery, even longer recovery time, and knowing that it was a perm. solution.
In that op, they disconnect the ureters from the kidney. They cut out a 18" section of my ilium and form a conduit or pipe. One end, on the inside is closed off. The other end comes to the surface and they make the stoma. Then both ureters are grafted into the conduit. Thus, the kidneys squirt urine through the ureters as normal, into the conduit (which has no storage capacity), and then it exits straight out the stoma into a dispsoable device. That is the whole jest of a urostomy. It can not be reveresed.
The problem is, most all that have this surgery, have it as the results of having bladder cancer or bladder damage, and their bladder is removed first, then the conduit/surgery part is done.
My oncologist said he had never, not once, heard of a patient with a urostomy that still had a bladder in place. He has serious second doubts of why my uro left it in place. At the time (2010), my uro said that without any clear evidence of bladder cancer, he couldn't justify removing the bladder. That's the official story.
Since then, I still have many excruciating bladder spasms a day, some lasting 2-3 minutes. Since nothing can enter or exit my non-functioning bladder, it doesn't make sense to have such pain.
I am high risk for bladder cancer (as in true bladder cancer) as the results of the radiation damage, or its possible (as my oncologist feels) that my remaining PC may be in the bladder, because most of the cancer in my prostate at the time was against the wall of the bladder that is shared.
So it should be easy to find out, right? That's what I thought. In June, my uro made a final attempt to surgical enter my bladder through my urethra. Couldn't do it, the scarring was so extensive that he couldn't get through safely, without extreme risk to damaging my rectal wall. He said he would never make another attempt like that. That is how they normally check for bladder cancer in a male. They would enter with a scope, take pictures, take biopsy samples, etc. So that has been ruled out.
The 2nd way, is to enter suprapubically into the bladder. The uro said he couldn't do that safely either, since according the MRI pictures, the walls of my bladder have collasped, like a flattened ball, and then if he attempted to punch through the bladder wall, too much risk of pushing all the way through the rectal wall.
The only other option, is to have open surgery, access the bladder, take samples, pics, whatever. Right now, my uro won't agree to do it, and my dr. said it would be risky for another uro to want to step into a mess like this, too many liability issues.
So that is the problem. At the least, my bladder needs to be inspected and samples need to be taken to see if I have any type of cancer present, before it gets out of hand. But there is no easy way to do it at this point.
My oncologist is checking with some higher level hospitals and teaching centers, to see if he can find me a top notch urological surgeon, who would study my entire history, and determine the best course of action. This can't be done in my area, but my dr. said that at some of the higher centers, they could even remove the bladder by robot, making it less risky and less invasive.
Since nothing can enter my bladder, the normal meds out there for spasms are useless, so none are being prescribed. So I am kind of between a rock and hard place with no easy answer or solutions.
Yet, doing nothing, is not a good answer either in this case, because if I do have some type of bladder cancer going on, its only going to continue to spread to other areas.
Appreciate your thoughts and your post.
David