I'm a 52 year old male. Originally diagnosed with High Grade Urothelial Carcinoma In Situ in late 2022. After some initial fumbles with a local urologist, I found my way to Mayo.

I had my first instillation of BCG in '23, 6 treatments. It didn't take and I was scheduled for a cystectomy. While awaiting that procedure I had a mild stroke (luckily received the clot busting drugs in time). Obviously, they paused the cystectomy and subsequently ordered a second round of BCG to some improvement. In the meantime, I met with a Neurologist regarding the stroke. It was discovered that I had Central Nervous System Vasculitis, and was ultimately the cause for the stroke.

Unfortunately, I am a total unicorn. I am currently the only living person with BCG induced CNS Vasculitis. I'm the first case at Mayo in 20 years and from the research I've found, one of two folks under 80, and anywhere from the 5th to the 10th person ever to have this.

Recently, I had another biopsy to discover the cancer has spread to my prostate.

That's me in a nutshell. I am currently waiting for my plan of attack. I'm scared to death thanks to the research I've done. I'll keep you all informed.

I'm not trying to scare anyone. In fact, it's the opposite. What's happening to me is RARE. The procedures and treatments are quite safe and effective. If you have any questions, I've been through a lot and would gladly give you my experience. Good luck to you all.