I have found out that doctors tend to downplay issues. My Oncologist didn't mention that the systemic immunotherapy (Nivolumab) would not prevent bladder cancer from occuring and she kept telling me I was doing great with no side-effects and pristine CT scans. So high grade bladder cancer was a major surprise. A smack in the head since no one said it was a possibility after UTUC, a 50% possibility. And the Oncoloist says that cancer chat rooms are not to be useful, but I find that talking helps. Doctors don't have the time.

I had blood sediment in my urine sporadically for 6 weeks after my TURBT, including the day of my first BCG treatment. My Urologist said I would be seeing more as the treatment continued. It is now 3 weeks after my 6th treatment and I am still voiding occasional blood clots. According to the BCG treatment info-sheet I should be concerned if there is blood in my urine, but the urologist says don't worry. So I sit here waiting for my July 12th scope thinking - blood clots because the the BCG treatment is killing cancer cells or blood clots because the cancer is killing my bladder cells or blood clots because the BCG is still irritating the bladder. It is frustrating that the doctors don't seem to understand that these situations are new to patients and what is a "normal occurence" to doctors is scary to patients. "Don't worry about it" really doesn't cut it at this point.