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1 year 6 months ago #53475 by Hannah01
Hi Petman, welcome to the forum and hope you find it helpful. Only if the cancer is back then biopsies are performed. The urologist relationship is most important and helpful in understanding and reducing risks. Best of Luck!

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1 year 6 months ago #53466 by petman
Sara Anne,
Thank you very much for your excellent response.
Petman

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1 year 6 months ago #53461 by sara.anne
It sounds as if your urologist is doing all the right things...except communicating with you! Usually further biopsies are not done after BCG unless it appears at a cyscoscopy exam that the cancer is back. If everything looks normal, you are "good to go" until the next exam. And your urologist is absolutely right in recommending maintenance BCG.
It has been shown that maintenance BCG significantly improves the outcome.

You need to find a way to communicate with this urologist...or find a new one. You are going to have a life-long relationship with him and there will be many questions that come up. You should be having cystoscopy every three months for two years, every six months until 5 years have passed, and then annually forever. Bladder cancer has a nasty little habit of returning, which is why these exams are so important and why you need to understand what the doctor is recommending.

Perhaps he was having a bad day? Maybe at the next appointment you arrange AHEAD OF TIME for a little extra time for a conversation. You can explain that this is your life, and that cancer is a scary proposition, especially if you do not understand the treatment recommendations. If you do not feel comfortable with the doctor then, it is time to change, even IF he seems very competent. This IS a partnership.

I would give him one more chance. My husband once had a HORRIBLE session with a doctor. We found out a few days later that he and his wife had lost a baby at birth the night before. Doctors are people too!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 6 months ago #53460 by petman
I registered today for the Forum. This is my first post.
I finished 6 BCG treatments after having one tumor removed and another papillary tumor begun.
According to the doctor after a cystoscopy the other day I was cancer free. I asked him, if he was going to do a biopsy at least where the last tumor was. He said no he did not have to. I did not ask any more questions, because he gets very upset when I do.
Does this make sense to anyone.
By the way I will have maintenance BCG treatments. 3 weeks of treatment and 3 months off for the next 3 years.
Petman

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