I first was diagnosed in 2010 when I was 50. Now at 66 and 15 years later I am still here and still have my bladder. I discovered blood in my urine and my journey began. I have had numerous tumours removed and 1 round of BCG treatment. I stopped before finishing my treatment due to excruciating pain peeing at the last treatment. I’ve also had stents which depending on where it’s situated is also quite painful. But they come out in 1 week after the surgery. In the last 18 months I have had 3 tumours out, the last 2 weeks ago. Unfortunately this was the first that ever was high grade. I find out tomorrow what the next steps are, probably BCG again. My urologist, Justin Vass, has been fantastic. I was sooo scared. His nurse, Jane, has also been fantastic. There was little documentation 15 years ago. Definitely more today, including this website and organisation. But you still rarely hear anything about it. For a cancer that is very common, nothing. It should be part of yearly physicals, just like PCA blood tests are.
Anyway will update through comments.