I too was recently diagnosed with stage 1 Grade 3 with a large tumor. Actually it was April 26th. Turb on May 2nd. Then another turb on June 6th. Postponed my bcg until the end of July due to the issues with my bladder. Today I had my 3rd treatment and I am sorry to say that they do get worse. But as many state here if it gets to be to intolerable they can lower the dose. There are a lot of great people on here to answer any of your questions and give lots of support.
My doctor went out of his way to priorities my surgeries and he calls me regularly to see how I am. I know he was surprised how large the tumor was when he went in the first time because he keeps remarking to me about it to this day. So I know you are right it is serious even though there are days it is hard to believe I am even sick, then there are days I am so tired I definitely know something is wrong.
Laurel, I think that the reason that your doctor is being so serious about this is that it IS serious. High grade can get out of hand quickly if not treated. So he adds a bit of "scare" to ensure that you follow the protocols. You ARE on the right track, and as you can see, there are a lot of us who have been where you are and are still here!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Hi Laurel and welcome too. I had same diagnosis as you in 2006, and have also had BCG , just had a maintenance treatment yesterday, and spent the afternoon drinking loads of water and not venturing very far from the bathroom, today still feel a bit fluey, but over the worst of it. It is not the pleasantest treatment but much better than some that other cancer sufferers have to put up with.
Hope all goes well for you,