In 2011 I had a Ta non invasive growth removed followed by mytomycin C which caused a severe reaction, ulcerated lining, pain, etc. The urologist and her practice stopped responding to my calls about pain when they saw no infection in cytology so ignored me until my GP called and forced them to see me and perform a cysto and they viewed the damage. The (now nervous) Urologist performed biopsy which came back as CIS from one lab and I was never informed that the specimen went to Columbia Presbyterian Hospital for 2nd opinion. A week after the urologist told me that neither she nor anyone in her practice had ever seen a low level non invasive growth followed by CIS and she could understand if I wanted my bladder removed, I got a call from the head of pathology at Columbia Presbyterian (Kathleen O'Toole, MD) telling me she thought my biopsy was a reaction to mytomicin C. After examining a 2nd specimin, Dr. O'Toole confirmed it. I left the urology practice and have continued treatment at Cornel Weill Med/ Center with Dr. Douglas Scherr. All my cystos for the past few years have shown odd cells but no CIS or anything until March 10 when a similar papilloma to the first appeared but much smaller. This time the cytology showed no malignant cells and the biopsy said abnormal cells suspicious of CIS - the specimin was not from the bladder lining which looked normal, but from the little papilloma. At the cysto, Dr. Scherr wanted to see me in 3 months but after I got nervous about the wording of the path report, he will see me April 21. He's done blue light before and seen nothing. I am very nervous, could use feedback. Thanks.
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