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Doctor stopped the BCG treatment after 6 treatment

4 years 10 months ago #48626 by sara.anne
Hello Wayne....glad that you found us!

One of the very rare side effects of BCG is a very serious arthritis. Your urologist is being very careful about this and doing the right thing. Brave as you are, there are some things that are best avoided!!

Many urologists only prescribe the initial 6 weeks of BCG and then do cystoscopies every three months for two years to be sure that the cancer has not returned. I was on the protocol where, after the initial 6 treatments, I had it every three months until 2 years had passed. I was on a very reduced dose by the end due to side effects. My urologist told me that not many of his patients made it to the end.

You have made it through the most important part and your doctor really seems to know his stuff. It would be considered malpractice to give you any more right now. You have had enough BCG to have an effect.

What was your diagnosis?

Relax and be proud that you made it through all six...some patients do not!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 10 months ago #48625 by WayneM
Hi, My name is Wayne,
I received my 6th BCG treatment last Wed. I was told I would have 6 weekly then once per month for 12 months.
Right after the nurse put the BCG into my bladder the 6th time she tells me the doctor said he was stopping the treatment.
He was not in office that day, so I called the next day and asked his main nurse why did he stop the treatment.
She said to me that since I was having joint and muscle aches for about 3 days after each treatment and needed to take narcotics for the pain it was too dangerous.
I was not too happy, I want to fight this! I wanted to go through all the treatments...its much better than surgeries!
Anyone on here know why he would stop the treatments? Is it really that bad that he needed to stop? Should I go for a second advise? I am a fighter, and I was willing to take some pain and tiredness to slow the recurrences of the bladder tumors.
I am really nervous about this...anyone have any advise please?
Thank you.
PS I live in Ohio.

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