Hi Mike and welcome to a club you didn't want to join....BCGers!! I did the six weeks initial treatment and then had maintenance instillations for two years . I am so grateful for it since I have been bladder cancer-free for 14 years now.
First piece of advice....ignore most advice!! A lot of what you read is not exactly correct. I will tell you some of my experience. The BCG was instilled into the bladder via a catheter in the urologist's office. I then drove 30 minutes home. Usually lay down and watched TV. For the first few times I did sort of roll around since I had read that this was necessary to coat the bladder. When my urologist heard about this he laughed and said that the bladder is small enough to get the BCG all over the surface and that this was not necessary.
I had been told to "hold it" for two hours or as long as I could up to two hours. The last few minutes were difficult, but I usually made it close to two hours. Then you sort of "live" in the bathroom for a while., Every time you pee you pour a cup of bleach into the toilet bowl for six hours. You will feel burning and urgency and will need to pee a LOT during this time. Drinking water helps wash the BCG through. It eventually calms down, but usually for a day or two you do feel urgency. Still, after the first day you can live a pretty normal life....back to work.
There are side effects to BCG and they get worse the more treatments you have. This is GOOD because it means that the BCG IS affecting the immune system when is what we want. The most usual early side effect is fatigue. Then there can be burning and urinary urgency (sort of like a UTI.) If the side effects become too uncomfortable the urologist can reduce the dose.
Remember that when you read "horror" stories online that people who have only minor issues are not nearly as likely to post their experiences and those few who have side effects!! BCG is a real "miracle" drug for a lot of us! It is no where near the experience that those unfortunate patients who need systemic chemotherapy have.
You will do just fine! And we will try to answer any questions you have.
Sara Anne
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