Bill,
Nothing is pointing to any reasons for a bad feeling about your outcome.
Sorry you had to join our club but glad you found us!
Be sure to tell the uro about the problems with the catheter insertions. First off, they need to be sure to use the numbing gel and to let it sit for about 10 minutes or so.
Usually, the part that hurts is when it's going through the prostate sphincter and then it's supposed to be just "uncomfortable" after that.
Many people do GREAT on BCG and wind up cancer free for years and years and years. Others, like me, have problems with BCG and also do fine for years and years. In my case, I was fine for two years but it came back and then I got a neobladder (new bladder made from small intestine and hooked up to the original plumbing).
Believe me, even if it comes back, you will be getting regular checks and even if it does come back (certainly hope not), there are many things that can be done.
When I got my neobladder in October 2008, they checked lymph nodes, prostate, and the bladder. They got it all so I didn't need any chemo or any other kind of treatment after that.
There are MANY, MANY others that have had similar experiences and are doing quite well with whatever diversions they got (neobladder, Indiana pouch, ileal conduit). My point is simply, things are not that bad and as long as you don't blow off uro appointments and keep to a regular schedule of follow-up, you should be just fine.
I don't have my bladder anymore, but I'm just fine and dandy. Nothing I can't do that I could do before.
It is normal to have burning, bleeding, frequency issues after BCG. The thing you want to watch for (I'm sure your doc gave you a list) is high fever. Issues can last for a day to a few days but then be better.
With the success rate of BCG treatment for non-invasive high grade bladder cancer, you should be feeling pretty good about your chances of not having it ever come back. I'm not telling you how to feel, just suggesting what the statistics mean in your case.
I wound up with high fever after my third BCG session and the uro stopped it and switched me to mitomycin C. I was begging him to keep trying the BCG but given my symtoms, it was too high risk for sepsis.
Anyway Bill, you were diagnosed and treated quickly. You've started on a course of treatment that is HIGHLY successful in treating bladder cancer.
Just to make it interesting, I will bet you a beer that you are still cancer free in two years if you keep on your uro's BCG schedule.
Now how's that for incentive?
Mike
62-yo male. Uro found my tumor May 1, 2009 (in-office Cysto). The Cysto was painful beyound discription. May 4, the tumor was removed (out-pt surgery in hospital). Pathology report came back as a "T1-high grade carcinoma".
My bladder burns, and urination is painful and I have just started. Is all the normal??