I'm a 50-year-old man with stage 1 bladder cancer, including CIS. Had TURB to remove several small tumors, followed by six weeks of BCG (with little to no side effects until treatment 6). Had a reoccurrence, so six more weeks of BCG. Just finished treatment number three. Wow, the second time around is totally different. Big-time inflammatory reaction. Feeling the need to pee constantly, lots and lots of blood, tissue particles being discharged when I urinate. (I tell friends it's like 'peeing hamburger'.) I feel like doing a touchdown dance whenever I pass one of these babies. Is this normal? I assume this means it's working. So, is it?...
Well, one way to look at it is that BCG has stirred up something! Let's assume it is your immune system, as advertised.
Seriously, BCG is the treatment of choice for CIS. And yes, your immune system has become sensitized to it. It is not unusual for the first few instillations to be relatively benign, and then for the side effects to increase as the treatments continue.
Did you have only a six week series or did you also have maintenance doses of BCG. Studies have shown that the six weeks and then a series of maintenance doses greatly increase the effectiveness of BCG.
If the side effects become too uncomfortable, your urologist can decrease the dose significantly, Even at 1/10the the original dose BCG can still be effective. By the time I finished my two year maintenance series, I was down to 1/3 the initial dose and this is not uncommon, You may want to ask your doctor about this.
Here is an interesting summary of information on BCG by Dr. Lamm, one of the experts in the field.
Hang in there Doug. The article Sara posted was very informative. BCG sounds like a pain in the butt to receive, but it seems to work well in most patients. I laughed about your "peeing hamburger" remark.
12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
It's not that bad, really. Yeah, a little painful and inconvenient. But if it means my white blood cells are kicking ass in there, then I say, that's a small price to pay. I really want to keep my bladder. I've grown quite attached to it over the years.