Transitional cell carcinoma, recent Radical Cystectomy

I am a 49 year old male. In October of 1992, I was diagnosed with Superficial Bladder Cancer. The tumor was malignant and quite large, but had not become invasive. 6 weeks after the tumor was removed, we did the BCG therapy. It was successful, and for the next 5 years there was no recurrence. I had regular cysto’s, and occasional biopsies and IVP’s. On the last cysto, there were some red areas in the bladder and we did a biopsy and ureter washings. It was then that we found CIS in the right ureter. A stint was inserted into the right ureter, and we did another BCG series. Over the next three years I had several stints and 2 more series of BCG. Ouch!

Several mmonths later, I started to pee blood. This time, a tumor was found down by the prostate end of the bladder. Once again the tumor was removed. Because of the lack of success with BCG, we tried the Valstar (valrubicin) therapy, which totally failed. Needless to say, the only alternative was a Radical Cystectomy.

What a brutal surgery! I was split up the middle, spent 7 hours on the table and 2 days in ICU. When I woke up, I had 4 tubes to deal with the bladder, a central line in my neck, and a stomach tube. My uro/surgeon removed the bladder, the right kidney and ureter, the prostate and all lymph nodes involved. He then built a Studor Ileal neobladder.

9 days after surgery as I was preparing to transfer to a sub-acute unit, I gave a little cough, and tore open the fascia. 3 more hours of surgery and another week and a half in the hospital I was transfered to the sub-acute unit. I spent a total of 3 weeks in the hospital and 4 weeks in the sub-acute unit.

The neobladder was irrigated on a regular basis, for 4 weeks, until the foley was taken out. This was the last tube to go.

I am now about 4 months post-op, and recovering nicely. The worst problem I have is being incontinent at night. My nights are quite moist. I wear a pullup type diaper and use bed pads to help compensate. Days are pretty good, leakage is minimal and I can hold 500 -600cc’s before having to void. I will spurt some, but only because I hold it longer than I probably should (trying to expand the pouch). At least I don’t have to wear those bulky pads, I use a washcloth folded in fourths. I put out a lot of mucus, but fortunately have not yet had to self-cath. I am told that this will continue for about a year.

I am doing lots of exercises to strengthen the pelvic floor, and monitoring the progress through biofeedback. Due to the incontinence at night, we are considering electrical stimulation to help strengthen the sphincter.

All in all, I would say the procedure was a success. The good news is that there was no metastasis, the bad news is that CIS was found in the left ureter. I have an appointment with an oncologist in two weeks to discuss treatrment options, which appear to be very limited. I don’t know if intravisicular therapy is possible, because the pouch tends to function like the bowel that it is, and absorb things.

I would be interested in any imput regarding post-op therapies to control the CIS. This has been a real wake up call for me, and I thank God I’m alive.

James