Hello @walleyebob. My husband and sons would like your moniker as they are frequent walleye fishermen on Lake Erie. Walleye in the freezer is a wonderful thing!
My husband followed much the same path that you are except for initial chemo and then BCG because the first tumor was muscle invasive and one positive l. node. Diagnosed in 2019, he was on 3-4 month rechecks at Mayo Rochester and every time there was either a tumor or a site to watch that developed into one. He got tired of the constant scopes and surgeries and elected to have a radical cystectomy/prostatectomy with neobladder formation in 2021 also at Mayo. Despite many complications postop for 2 years, he is still cancer free and glad he did the surgery. Self cathing becomes a part of your life that you might never have imagined pre cancer.
In our experience the same basic pattern seems to be accepted at Mayo as well. They have a survivorship clinic that monitors the rechecks, performs the cystos, and arranges further surgery as needed. Some patients continue this for many years. Having a high grade aggressive tumor most likely increases the risk of recurrence. Have you had any BCG infusions to see if that local immunotherapy will decrease the frequency of tumors? My husband was a BCG failure because once on maintenance infusions, the tumors started back. It has been hard to come by so a smaller hospital may not be able to offer it. You can also try to arrange a video visit with a Mayo urology surgeon after sending in all your records. Im not sure if they have a Urology Oncologist yet or not. We were told they were working on having that position filled at Rochester.