I had a TURBT for a T1HG (1.5 cm tumor). Then my first "round" of 6 weekly BCG treatments.
I went 2 years before a second tumor was found.
2nd tumor removed, second round of 6 BCG treatments was completed one year ago.
I've had 3 cystoscopies since completing the BCG and so far I'm good.
I expect if there is a 3rd tumor I'll have it removed and do a 3rd round of BCG.
My first round of BCG was easy, no side effects. I thought that there was something wrong because I had no problems. After going 2 years without finding a new tumor, I thought I was cured. But, bladder cancer is something we need to fight all of our lives.
My second round of BCG was terrible, with pain, bleeding, and bladder spasms. I had to sit on the toilet all night because I was passing a small amount of urine and blood every 5 to 10 minutes. I started taking medication for the spasms and that helped a lot. If I go for BCG again I'm going to take the anti-spasm meds before BCG so that they are already in my system and helping me
To me, what this proves is that bladder cancer treatment is something that each patient and doctor must discuss and decide what they want to do. There are so called "standards" but they are subject to individual situations.
We all need to keep a positive attitude and keep fighting. We also need doctors that we can trust and understand, doctors that help us participate in the decision making. Trusting your doctor is very important, but don'r be afraid to get a second opinion.
Good Luck!