Hi everybody. I'm back. It's been about a year. For those of you who don't know me, I had high grade noninvasive cancer (TaG3) plus CIS in 12/2000. My urologist treated with mitomycin C instead of BCG and I remained cancer-free for 10 years. Unfortunately I had complications of treatment - a urethral stricture that caused me no end of grief and finally required a urethral reconstruction in 2009. I've had many follow up cystoscopies and often had areas of redness. Last year when I had an ill defined epididymal mass for which I needed surgery I asked my urologist to biopsy my bladder and I had CIS. Fortunately with my urethra repaired I was able to be treated with BCG, after which my biopsy was negative for cancer. Subsequent to that my urologist continued to see a red area in my bladder, and he agreed with my request that if it persisted for a year we would biopsy it. The results - a recurrence of CIS.
I've already posted this on the non-invasive board but decided to repost on the invasive board because I want to hear from people who've had radical cystectomies.
I have read that delaying cystectomy to preserve the bladder can end up shortening one's life. I have no great love for my bladder as it has caused me a great deal of pain, and since I haven't had an erection since the urethral surgery 2 years ago, I'm certainly not concerned about the sexual side effects of a radical cystectomy.
My urologist does not think a radical cystectomy is called for and would like to treat me with intravesical valrubicin. I'm tempted, not because I want to keep my bladder, but my partner (I'm a pediatrician) is retiring due to a recurrence of pancreatic cancer leaving me alone to run our practice. I don't see how I can manage being out for 6+ weeks. But then I could have a reaction to the valrubicin... Probably not an issue as far as work since I've gone to work many days in pain over the years.
I told my urologist I need a second opinion and he recommended William Huang at NYU. I also got a referral from the uro who did my urethral reconstruction to Douglas Scherr at Presbyterian/Weill Cornell. Seeing both of them this month.
So, now I'd like you all to cast your votes and voice your opinions as to my next step.
I'd also like to know what to expect if I have the radical cystectomy - length of hospitalization, recovery period before returning to work, dealing with continence issues, complications any of you may have had.
-Warren