I had an initial small papillary TCC tumor (low grade, non invasive) in 2006, then a recurrence (2 tiny ones, same type, stage and grade) in 2008. Finished 6 weeks of BCG in mid September, and go for cystoscopy the end of October, then maintenance BCG in December. I'm by nature an optimistic person, and though I was disappointed in the recurrence, I was glad it was the same type, and that there was a relatively long interval between the first diagnosis and the recurrence. As others have said, in spite of high recurrence rate, blc is very treatable.
In some ways, I try to think of it the way I would low grade skin cancer, though the checkups are certainly more unpleasant! After my first diagnosis and treatment, I generally went in for my 3-month check-ups with the assumption that there would NOT be a recurrence, and of course the more all-clear checkups I had, the more optimistic I got. Because of this optimism, I was perhaps more upset at the recurrence than I would have been if I had been more pessimistic. However, I've adjusted to the "new reality," and am resigned to several years of BCG maintenance. I had been looking forward to shifting to 6-month check-ups, but as someone else said, better to have to put up with frequent check-ups and to sty on top of any recurrences.
When I first met my urologist, he did say we would get to know each other very well, and he wasn't kidding!
Ann
