You have probably read over and over again while researching this on the internet that finding a surgeon/facility that specializes in neobladder surgery is very important. I can't agree more. Also, I feel that finding a doctor who completely understands that the goal of the surgery is not only 100% Cancer removal but also giving you the quality of life you want post surgery is just as important. Have you had this discussion with your doctor? I was told that the majority of the surgeons will as a matter of course remove the prostate, surrounding lymph nodes and major amounts of surrounding tissues to just be sure they got all of the cancer not caring about how it will effect you afterwards. Again, their only goal is 100% cancer removal. They were not used to dealng with a single athletic guy like me who was not willing to live with whatever results came out of this just to be there for their family long term and to continue their couch potato life style.
Starting with my initial visit we were focused on the two goals. Even though from the cystoscopy the doctor could tell that the tumor was muscle invasive and the very aggressive type they still tried to saved my bladder with the TURBT. Even though they did not succeed after these procedures because of the specifics of my tumor (size, depth in the muscle, age) it allowed the surgeon to learn exactly what he was dealing with. During my RC he had a pathologist standing by while he constantly took samples of the surrounding areas for the pathologist to immediately analyze. This way he only removed what was absolutely necessary. When I woke in the ICU he told me "I have been doing this a long time and even though the pathologist is not completely done I am (almost) sure I got it all". A couple of days later the pathologist confirmed what he said and that no cancer was found in any of the extensive margin samples or scans. This is the type of surgeon you want. He explained to me that the only reason the part of prostate was removed was because the tumor was right next to it. I think the reason my results have been so good and the quick recovery is because the majority of the surrounding areas were spared.
Yesterday, one month out of surgery I went to the gym and took it real easy. I did 10 minutes of each of the stair master, elliptical trainer and treadmill. I wore my regular underwear and did not leak.
I can't emphasize enough that before the surgery make sure you are in the best physical shape of your life. It will make the recovery that much easier. Good luck! Getting walking around the hospital floor within 1-2 days after the surgery even though the catheter will be hurting you really helps. The morphine based pain meds are great for the pain but suppress your breathing and make you constipated (very bad for your traumatized intestine where they took the piece out of) so use as little as possible.
I just received the first invoice that only included the 7 day hospital stay and fee for use of the facilities for the surgery. It does not include the surgeon, anesthesiologist, pathologist etc. Total $193K. Ouch! Fortunately my insurance will cover most of this. I would double check what your insurance covers and does not. The final cost of the TURBT and related was an additional $30K.