Thanks for sharing your story. I already have it in my head that unless it spreads in a really fast manner, I want to explore other options before having something done as drastic as removing the bladder, such as a few 2nd opinions, chemo, whatever.
My experience here in Australia has been similar. After the 2nd TURB necessitated to clarify the extent of high grade CIS the pathology indicated Stage 1. However the oncologist was concerned about the extent of CIS and explained that an extremely radical approach would be to go for removal. Having said that, he did say that post operative investigations on removed bladders indicate that in 50% of cases there had been no need for removal. His comment on BCG was that it had an excellent chance of success with only a 35% chance of some recurrence in 5 years. (Normally 25% but my situation seemed to be worse). He consulted his peers and they collectively recommended BCG plus a comprehensive and frequent monitoring program. Following 2 TURBS and 9 BCGs I have since had 2 scopes over 6 months both showing no active cancer. I will have another scope in Aug and 3 more BCGs in Oct.
His comment on removal, due to my interest in the 'final solution', was that a second opinion would be great BUT BEWARE WHO GAVE IT. He warned that sadly there are some who would jump at the chance of a privately insured patient to practice their surgical skills at my expense and leave me with life changing results albeit with no cancer. Being UK trained he said he took his Hypocratic Oath to 'do no harm' seriously, and would only advise BCG in my situation. I shall ever be grateful to him.
CIS diagnosed May 18
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019
I have been referred to a urologist that specializes in bladder cancer. Both the oncologist and the first surgeon spoke of him during the visits. He is the one that would do surgery IF surgery is needed after the next scope ( which he will do )
Agree that why are you not seeing a urologist? One that specializes in bladder cancer as too many see mostly prostate issues! Cleveland Clinic is very well respected in bladder cancer. There are many here that have had stage 1 BC and have been able to retain our original plumbing. That is statistically valid. I have learned from several other issues I have had good medicine does the least invasive option until proven you need to go to the next step.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.