KS - My wife had the same diagnosis as you and just had a radical cystectomy 3 days ago. She is at Cleveland Clinic now recovering. The doctor involved has many years of experience with this and believed this was the lowest risk option. If you go with BCG or some type of chemo you run the risk of losing valuable time, if it does not work, and with high grade it does not always work.
Where are you located and are you seeing doctors with adequate experience and expertise with this?
Sorry you are still having pain. It sure looks like you made the correct decision on changing docs! Let's just hope the next scope shows all clear and then you can go about erasing this chapter out of your past!
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.
Sorry if I confused you by mentioning removal or reconstruction of the bladder. This MD will be doing the next scope to see if it has come back and then biopsy if needed will be done by him as well and any other surgery that should be needed. When I called about the referral to this Dr. I was told I would need to see the original surgeon and I refused. That guy doesnt seem to know much or flat out lied or with held info from me when we got the initial biopsy results. He told me he got it all and that no treatment would be needed. 10 days later for the post op visit is when he dropped the bomb about needing chemo and possibly radiation. We were all shell shocked with that news! So, no, I refuse to go back to that guy. Then the oncologist tells us that a second scope is always done after a healing period to recheck.
The zingers I refer to are very sharp, knife like pains that are real doozies! Will be a month on the 21st that it was done and they seem to be more frequent with each passing day and now the pressure is back. Never a dull moment it seems.