My cancer recently progressed from CIS T0 to T1 (first diagnosed in 2017). I have had 24 total BCG treatment, and failed treatment twice. My doctor and the oncologists have recommended cystectomy, as the general consensus is that simply moving to chemotherapy is akin to kicking the can down the road, with the potential to be worse later on. I spoke with a one of my in-laws whose nephew is a professor of oncology at UW-Madison and she passed along my history to him. He also agreed that cystectomy is the route to go at this point. I have also had my second staging biopsy (standard practice is to do another biopsy prior to surgery) and it confirmed the T1 diagnosis. The good news is that it hasn't metastasized outside of the bladder, so long term prognosis is very good if the bladder is removed.
They scheduled my surgery for January 25th. When I had the initial call to schedule my meeting with my surgeon, I asked if the surgery was going to be performed robotically or laparoscopically? The scheduler did not know and kicked the question back to my urologist, who later informed me that since I opted for a neobladder it could only be done as an open surgery (neither robotically or laparoscopic). I am a patient with Kaiser Permanente in Portland, OR. From what I have seen on line, it appears that robotic surgery, even for cystoscopy with neobladder, is pretty common. I have seen one study, completed in 2018 that showed the outcomes for cystectomy robotic vs. Traditional are quite similar, the only difference being that cystectomy done robotically heals faster with much less blood loss.
I asked my urologist for a referral to OHSU, but he is telling me he can't do that since Kaiser can offer treatment. I realize I am running short on time, but I would still like to explore options, does anyone have any advice?