I was diagnosed with CIS in February 2014 and started BCG treatment immediately after my first biopsy. After my first round of 6 treatments I still showed some CIS in my second biopsy. We started a second round of BCG that included interferon and after 3 treatments I had a severe reaction to the BCG and had to stop. We completed the next 3 treatments with just the interferon. My 3rd biopsy showed all clear and we went to a 3 month cystoscopy with no maintenance since I had the bad reaction to BCG. My first cystoscopy / cytology showed all clear. I had my second 3 month cystoscopy / cytology at the beginning of the month. I did not hear back from my urologist after a week so I sent him a message. He responded 2 days later with this result in his writing "Mike, the urine cytology results are negative for both the visual examination and the FISH testing. I am very pleased, and happy for you. See you in May" Great right? not
He calls me last night and says I need to talk to you about your results, he said the
cytology shows dysplasia and the FISH came back positive. I responded to him that he sent a message saying I was all clear. He was embarrassed and said he was in a meeting and needs to get back to the lab today and will let me know what happened.
Is this an acceptable mistake? needless to say I did not sleep much last night
Well, Mike. That IS a strange kettle of fish! So I will be playing the "on one hand...but on the other" game with you. First, we all make mistakes...it is what we do when we discover them that makes the difference. The most important thing is how do you feel about this doctor...leaving this situation out of the equation. Do you have a good relationship? Does he answer your questions? What was your confidence level? If any of these are real negatives, you have a good excuse to exit.
On the other hand...No really bad outcome came of his mistake (if you discount your frustration and discomfort.) I had a very bad outcome from a mistake by an ophthalmologist once and left him immediately. The fact that he blamed everyone else and never apologized helped. I think that a lot will depend on your urologist's behavior now.
It is your call!
I will be very interested to see what he recommends now....should his second dose of information be correct.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
My urologist didn't call me today but I did receive an email from him late this afternoon.
Mike, sorry about the confusion about the cytology results. I figured out how the confusion happened, Hilda called Dianon Lab on 3/3/15, they told her that results were not ready yet but would be ready the next day. They then faxed an old report from 11/14 to the office, I thought it was the recent result and sent you a note that it was negative. The new result did not come to the office until yesterday, and the recent result does show dysplasia and a positive FISH. Sorry about the confusion, we will check again at your next cystoscopy.
I told him I do not want to wait 3 months and want an appointment to see him this week. I will also ask for a biopsy now and discuss treatment options.
So I met with my urologist Friday and when he came into the room he was very apologetic for what had transpired. He hands me a pathology report that now says “all clear” and then says he is not sure what happened. He went to the labs data base and the report that said positive is no longer there and this new report is there that says clear. He thinks the lab has made an error but says that he can’t get in contact with the director there. We took another cytology and will get those results in a week or so. Bottom line is it seems like the bad news may turn into good? I think he dropped the ball on this one and is scrambling but I hope the latest report is in my favor