Thank you, Alan! Yes, they have alternated CT and scopes since nephrectomy. What makes it even more rare is that I am a 48 yr old female. Original symptoms started when I was 47. Honestly, I urinated blood on and off for a little over a year before they found it! CTs with contrast never caught it( human error because after the pyelogram verified it and surgery was done they went back to the most recent CT before surgery and amended the results). They did cytology which showed the problem, that led to the pyelogram to find tumor in the renal pelvis. Nephrectomy biopsy was T1. Dr said the top of ureter had a small area that looked irritated but no cells. Said it was a good thing we got it out when we did. So that was in March. Have had 2 CT and 2 scopes since then with the last finding this, of course...3 tumors in bladder came back as Ta. He referred me to a new oncology/urologist (he has good reviews, only 8yrs experience but at a university hospital who sees a lot of patients), yesterday but said BCG should start in a few weeks and possibly another TURB by new Dr.
Yes, my circumstance is extremely rare and I am having a hard time finding others to talk with who had same situation. I know there are many out there...curious how many under 50.
