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Odd symtoms

3 years 8 months ago #48622 by Jennie
Thank you so much, Sara Anne. I am scrupulous about regular cystos. In 2011 I reacted instantly upon viewing hemoturia which is how I ended up with the incompetent urologist who is local in my area. She cause me much emotional anxiety from which I still suffer. Now I travel into NYC to Dr. Douglas Scherr at Cornell Weill Medical Cntr who is a nationally recognized urologist.

Jennie

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3 years 8 months ago #48621 by sara.anne
Hi Jennie....and welcome. While I am sorry to hear your story, I commend you on your progress so far. You did absolutely the correct thing in abandoning the first uro! Many of us have had a low grade papillary tumor and, on the second TURB (which is a really good idea) they found CIS. That urologist is surely NOT familiar with the course of bladder cancer...and, unfortunately, is not the only one out there. You are now in a good place for further treatment.

It would not surprise me if your new team did another TURB to be sure about the possible CIS diagnosis. That is the only sure way to confirm a diagnosis. And you want to be scrupulous about those 3-month follow-ups. As for the abnormal cells, since you had such a bad reaction to the mitomycin, there are probably still a lot of very unhappy cells in your bladder lining and they are probably not indicative of cancer.

Even is CIS is confirmed, there are good treatments for it.

Best of luck to you and please let us know what happens.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 8 months ago #48620 by Jennie
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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