Imaging a couple of months ago found a 2.5cm mass in my bladder which turned out to be a papillar tumor , and the pathology from my TURBT a week and a half ago indicated that it was invasive high grade (grade 3, with a proliferation index of 70%!) urothelial carcinoma. Unfortunately, the surgeon didn't go deep enough to get any muscle cells in the sample, but it did show invasion of the Lamina Propria, so it is definitely stage 1, and possibly stage 2.
Doc is treating it as high-grade stage 1, and is recommending that I repeat the TURBT in a few weeks, and provided that the next sample either is clean or confirms Stage 1, that we follow up that second surgery with immunotherapy (6 weekly infusions of partially active TB virus into my bladder to stimulate an immune response that will fight the cancer in my bladder. This was his recommendation over the phone when he gave me this news last week. I've got an appointment in a couple of days to have a more in-depth discussion with him.
My concern is that in an effort to save my bladder he may be taking too conservative of an approach in presuming that I've got Stage 1 rather than Stage 2 cancer. As aggressive as this appears to be -- plus the fact that I'm a Type-2 diabetic struggling with my blood sugar and a urine sample taken before the surgery showed a glucose level >500mg/dl in my urine -- I'm really fearful that I've actually got stage 2 cancer, for which the treatment would be to remove either part or all of my bladder.
I'm afraid that we'll find out after the second TURBT that it is actually stage 2, and then we'll have to schedule another surgery to remove my bladder and in that surgery we'll find that it has spread outside the bladder.
What makes the decision even more difficult is that I read an NIH study that stated that if you are remove the bladder before the cancer spreads outside it, that the 5 year mortality jumps up to about 95%. That same article says that there's a longstanding conflict within the urological community about whether aggressive treatment (taking the bladder) vs conservative treatment (which is what is being recommended to me) is more appropriate for high-grade invasive bladder cancer.
And then there's just the plain fact that this is all scary as hell. I lost my wife 2.5 years ago to glioblastoma in her brain stem (discovered it the first week of the COVID lockdown, she passed 13 months later), so its really rough facing this alone. I have an 18-yo son who is AWESOME, but I'm trying not to lean on him for emotional support too much as he's only now starting to thrive again after losing his mom.
So I'm interested in any thoughts or support or success (or even not success) stories people in similar situations might have. Thanks in advance for any responses!