Jes1968,
From my patient perspective, with questionable BCG effectiveness (open to interpretation) for the past 36 months, I question a number of things that seem to be missing from your timeline. My course of treatment has been somewhat different from what you describe.
Terms "papillary" and "CIS" describe the most common bladder cancers, and are not mentioned.
Diagnostic tests, specifically CT Scans, Reverse Pylogram and Cytology are not mentioned.
No mention is made of a bladder wash with mitomycin (or other drug) following TURBTs.
All or some of these may have been done, but just not included in your narrative; they CAN BE important items to consider before simply changing to a different intravesical agent such as Gemcitabine.
I faced the situation where it became unclear if BCG was going to do the job. I have only one kidney, and that limits my options. A workup at a major cancer center, as has already been mentioned, looked beyond simply treating with bladder instillations and opened possibilities NOT available with my local urologist.
It is good that a large percentage of bladder cancers can be successfully treated by general urologists in our communities. At some point, I found it reasonable to consider a workup by doctors specializing in bladder cancer, who had tools beyond those of the local general urologist.
Your doctor should be able to refer you to a super specialist clinic at a NIH Center of Excellence or a major university/teaching hospital for a second opinion. A second opinion can be good for you, and may be welcomed by your current doctor.
I am still remitting and relapsing, but finally beginning to see some progress. My local still provided regular treatment, but that second pair of eyes keeps watching and advising.
BCG FAILURE is term that is much debated. A Google search will provide much info. I suggest one of many possible articles for review:
www.nature.com/articles/nrurol.2015.58
ALWAYS talk to your care team about what is best for you and your situation. Don't accept what you find online as fact or a best practice.
The high level second opinion was a real plus for my situation. I hope this helps you and your doctor decide what to do next.
Best,
Jack