Nerve Sparing Neobladder

December 14th 1992 a day I will never forget. I was 35 years old and battling with polymyositis (many weak muscles) a form of muscular dystrophy. I was taking 100 mg a day of prednisone just to be mobile. So when I awoke and went to bathroom for the first time and half asleep, imagine my surprise to feel myself passing something in my urine. This indeed opened my eyes to see a toilet full of blood and something floating. At first I thought my muscular dystrophy doctors never told me about anything like this happening, so I was fearful that I had progressed into a new stage of MD. Polymyositis is a form of MD that you can grow out of and I eventually did.

After talking to my attending doctors they told me to go to the emergency room immediately. At the time I was covered by Kaiser Permanente in Los Angeles. At the E.R. I was told that I had ‘sexually transmitted disease’ (VD). I told them how unlikely this would be as I had been with only two women in the last 13 years, my first wife of 12 years and my soon to be second wife. They did every STD test they could find and then decided it must be an infection. This is after I explained that I passed what looked to be a piece of tissue. This went on until March 1993. At which time I was walking down the hall after a screaming session with the doctors that still insisted that I had some form of STD. As I was walking to the elevator a doctor took me to the side and said, “Have them check you for bladder cancer”. So I went back and asked them what the possibilities were that I had bladder cancer. They said slim to none considering your age.

I told them I smoked a pack a day since I was 10 years old and also worked in the oil industry. One of their replies was “I‘ve smoked longer than you and I don’t have bladder cancer”. I demanded to be tested for bladder cancer having no idea what that test was. They finally agreed but told me it would six months to get an appointment. My new wife and I were waiting to get a handle on this before we moved to Oregon and start a new life together. We called Kaiser in Oregon and talked to the urologist, Dr. Manson, after hearing what I told him he said as soon as I could get there we would test me. It took us two weeks. I will never forget the nurse coming into the room (with the table) and this long skinny black tube looking thing. I asked her what that was for. While she was inserting the lidocaine into my penis she said “that’s what the doctor will use to look inside your bladder”. Being dumber than a box of rocks I still didn’t realize even with the clamp on the end of penis what was about to happen. The doctor came in introduced himself, removed the clamp and without as much as a howdy-do slid it inside for a look. He was in there for about 10 seconds and pulled it out. I thought, "Man, I never want to do that again."

I sure was glad it was over so fast until he said, "I saw a couple of tumors and I will look more during surgery." I said WHAT? He said, "The surgery to remove the tumors in your bladder." Talk about bladder cancer 101. After the TURB I was found to have four tumors one of which was stromal invasive. Grade 2 approaching 3, stage T1. The comment on the bottom of the pathology report read “considering the patient’s age this neoplasm looks relatively ominous”. Went through 6 treatments with BCG full strength, no problems. Other than it was a four hour drive each way to the doctor. Luckily there was a rest area at the two hour mark. At that time there was nothing said about the hazards of BCG as far as being a contaniment to others. So then I went for the poke and peek every three months for the first year and then every six months. Just when I was about to go to one year between scopes, they would find another tumor. This went on for the first four years.

In 1997 we moved to Tennessee. I found a doctor at Vanderbilt and because of my history I was assigned to Dr. Joseph Smith, the head of urology. Went in for my yearly check up and he was in and out in five seconds. I thought, boy he is good. Fully expecting a clean report. Then he said, "We will look further during the surgery." Had another TURB and found a TO grade 1 tumor. Removed it, no BCG back on every three months. For one year. Then once a year for the next eight years.

September 2005 I started to notice some blood, so back I went. Scoping did not reveal anything and there was no infection. Thanks to the persistence of Dr. Smith, I had a CT scan that revealed a thickening of the bladder wall. The radiologist suggested it was nothing to worry about. Thankfully that was not Dr. Smith’s outlook and said I’m going to take another look. This time he saw what appeared to be a very small superficial tumor and said that we need to go get it, fourth TURB.

When I awoke I found my wife crying, I asked what was wrong and she said Dr. Smith had said this was no superficial tumor. It spread out like fingers and was deep, would not know for sure until the pathology report came back but was sure that the bladder would have to be removed. Sure enough he called, me I asked him is it staying or is it going? His reply was "How does November 1st sound?” He said I was a candidate for something called a neobladder and took a lot of time explaining what that was, and how he was going to do it. The surgery took three hours and they removed 12 lymph nodes and hollowed out my prostate and kept the nerves. Which was a success and I was out of the hospital and back home in six days. Had the catheter in for four weeks instead three because of Thanksgiving.

Surprisingly, the surgery was a piece of cake. Moments of extreme discomfort but nothing like you would think there would be. I am now three months post op and actually I am feeling better than before. I am also a diabetic that did not have control over it. But two months before I found out about the recurrence I started walking three miles a day. I’m sure that this helped in my recovery. Now I am up to 4.5 miles a day and feeling just great. I have complete daytime control and only get up once a night to go. No leaking and I have been dry at night for the last six weeks. They probably should have taken it out from the start but that’s Kaiser for you. It turned out to be a blessing because it put me in the hands of one of the top surgeons in the country.

Any questions feel free to ask. I’m not bashful so bring them all on.