For Al a question on Rebuilding Bladders

Hi Pat;
Thanks for your reply.

This the best information I know

(one tumor the size of two golf balls)
Pathology Report 2005 Bladder Tumor: Papillary Urothelial Carcinoma High Grade. Neither Lamina Propria nor Smooth Muscle Invasion are Identified
Dr Donahue stated it was aggressive

(45-50 tumors)
Pathology Report December 9th 2008 Bladder Tumor: 1. High Grade Papillary Urothelial Carcinoma. No Lamina Propria Invasion Identified. Muscularis Propria is Present and is Negative for Tumor. 2. Bladder Neck Tissue, Biopsy; High Grade Papillary Urothelial Carcinoma With Underlying Prostatic Tissue, No Lamina Propria Invasion Identified.
Dr Donahue stated it was "VERY aggressive VERY Intrusive and VERY high Grade".
. "It is incurable but he could try and slow it down with BCG"

Dr Julio Hajdenberg MD Anderson if memory serves me first time I heard T1 strongly recommended neo-bladder.

February 19th 2009 seven more tumors found during evaluation for neo-bladder
Dr Russer of Shands Hospital I don't have a copy of the pathology report but it was considered low grade. treated with Mitomcin C (thanks to you I asked and it was confirmed)He stated he would support BCG or removal my choice

April 3rd 2009 five more tumors biopsy taken no results yet.
Dr. Steinberg wants to try BCG.

All of them have stated it is inevitable that the bladder will have to be removed its just a matter of when. With my other health issue there is a concern on my part that I might not be a viable candidate 3 years down the road.

On April 17th I have an appointment with Dr Julio Hajdenberg, MD Anderson so I have postponed the first BCG scheduled for April 13th until after this appointment. From the last conversation with him, the wife and I both resigned ourselves to this course of action. It was not easy. If he still believes the neo-bladder is the best course of action I'm inclined to get it done and over with.

To be honest I have no idea if anything I decide is the correct choice. To Many Doctors, to many opinions, and from my perspective to many tumors. If I sound confused and or frustrated...............I am.

One question Al.....what kind of tumors are we talking about? What did the pathology say on the tumors. That kind of makes a difference on whether to wait or not. If we're talking T or T1 low grade each time i would continue intravesical treatment. If we're talking T1 high grade or TIS formerly known as CIS which is always high grade.....you have a roll of the dice as to your treatment. Can you clear this up?
Pat

Al,

That's a tough question. I think some docs think keep trying to save the bladder until it's clear they can't. Once it invades the muscle wall, then they will mostly all agree it's time to take it out.

They remove the prostate during the RC surgery. Even with nerve sparing, it can take from one to three years before erections can happen again just because of that. There are pills and shots and things that can be used to address that problem in the mean time but it is something to consider.

Of course, when you are facing the chance of cancer spread, the above problem certainly drops on the priority list.

Given that they have to take a bunch of tumors out each time, it seems like recovery time after each one could be a bit of an issue also for you so that would certainly weigh in the decision.

Personally, when my bladder cancer came back after 2 years, I decided I was going to the get the surgery even if it wasn't invasive. I had failed BCG and Mitomycin treatments so my thinking was get it out and eliminate the chance of recurrence. Turned out that it was invasive in my case so the consensus was removal anyway.

If they are doing surgery every six weeks, it seems unlikely (don't forget I am a patient and not a doctor) that you still have 3 years left before it's time to remove it.

What are the different recommendations that the docs (including MD Anderson) are making and what are their reasons/assumptions to support those recommendations.

Mine was CIS which is very aggressive. If yours is not aggressive, then they make agree it will come back but they must be assuming that they won't have to keep removing 5-7 tumors every six weeks.

Mike

Mike;

just a quick question although I have thousands. I'm faced with going for the neo bladder or the next 3 years of BCG and then neo-bladder. Right now every 6 weeks they are removing 7 to 5 small ones even after Mytomycin. All three of the urologists and the doc atMD Anderson agree that it will continue to come bach so is it worth the wait? Of course they don't agree on how to proceed.

Thanks

Al

Al,

I just want to follow up on Mike's comments. I have the second diversion he mentioned...it's called an Indiana Pouch...sometimes the doctor will place the stoma at the navel, belly button location, but some doctors, like mine do not...mine is located about two inches over from the navel and two inches down. More women choose the Indy but some men have it as well. We are lucky if we are able to choose which diversion we would like...the doctors can't promise anything until they actually have surgery underway...what they find inside may determine what they can build for the patient. Melodie

Al,

If you get to this site and see this, you should also be aware that it is typical during a radicial cystectomy to remove the prostate. If possible, you want to get the "nerve sparing" version of the prostatectomy.

I have a neobladder and would be happy to answer any questions you have. It is VERY possible and done very often these days. There are different types of urinary diversions possible and it all depends on your situation.

They typically use a segment of your intestine to build the new bladder. Since it already a part of your body, there is no issue with rejection. If possible, they hook your ureters up to the pouch they make from the segment of intestine and then hook that up to your urethra. After some time and excercises you will be able to use the new bladder similar to the old bladder. That's the best case secenario but there are also times when they create a pouch out of the intestine and do not hook it up to the urethra (variety of reasons). They can then make a conduit that can go to the navel and then be self catheterized when needed. The other option is a stoma and the bag on your side.

Regards,
Mike