Bladder Cancer

[Bill in Philly]

Just joined, and of all the online sites and message boards I've participated in, well, I've had more fun reasons but this is a great resource and many caring people. I've been looking through the comments and experiences.

If any members here have had to make the choice whether to get a partial or total removal of the bladder, I'd like to hear how they look back on that choice.

I'm still gathering info about my situation so I'm not looking for specific advice - there's so many unknown variables, it's way off the scale as the hardest decision I've ever had.

For background, I'm 58 yo man, non-smoker, my only health issue was obesity and related stuff like HBP and cholesteral. Last year I decided to change that and joined Weight Watchers, and as of this spring had lost 75 pounds and reached goal weight.

Noticed bloody urine in May, ultrasound read normal, CT and then cystoscopy showed tumor. Had the TURBT last week, biopsy showed cells in muscle under tumor, but other samples from bladder lining were clear. Urologist thinks I'm a candidate for partial cystectomy and we're getting second opinion at cancer center. So I'm taking that as a positive, to at least have the option of a partial.

Obviously I want to get this done soon. Make the decision, and then figure out how best to spend my last few weeks with a complete bladder. While trying to maintain a sense of humor, even if grim. And wondering about how to tell the people that were worried about my health when they saw how much weight I lost, and I assured them it was on purpose and I was in great shape? Obviously, a single little tumor doesn't have that kind of systemic effect, but I almost want to get a doctor's note so I can maintain my ego pride in the successful diet.

So to recap -- I'd like to hear about your experience making this choice. Thanks so much.

[Bill in Philly]

Guess I can answer my own question. The second opinion specialist was able to schedule a consult quickly.

My first urologist seemed to think the partial was a good option, but said it would be reasonable to choose the total.

From my research and contemplation in the meantime, I came to lean pretty strongly in favor of the radical cystectomy. The bottom line came out this way:

with either procedure, there's a significant chance of recurrence.
with either procedure, there's a good chance of non-recurrence.

In either of those future outcomes, the partial would obviously be preferable; much easier surgery, recovery, and less lifestyle impact, and no impact on the outcome.

Between those two scenarios, there's a degree of probability that the radical would remove the risk of recurrence (obviously, it removes the risk of recurrence in the bladder, and reduces the risk of remote). There don't seem to be any studies that quantify that risk.

but, as I pondered it, it seemed that unless that middle scenario has a probability approaching zero, the choice becomes a no brainer.

So that was my mindset going in to consult with the specialist at a nearby cancer center. I was greatly reassured when his recommendation was strongly in favor of the radical procedure. He confirmed that the way I analyzed it made sense, that he couldn't give an estimate of what the radical procedure did for the odds, but it was definitely significant, and that this treatment is the gold standard.

The main worry now is that his schedule is pretty booked up, so the first date he had available is Sept. 11. I'm going for the neobladder and figure I'll have plenty of time during my recuperation to participate here.