New Guy,
Do you have a stage and grade? Number of recurrences doesn't trigger the decision for bladder removal so much if the tumors are low grade. Lots of "it depends" with bladder cancer. Any recurrence of high grade should give pause to consider removal.
What I can tell you though is having your bladder out isn't so terrible in the grand scheme of things. I had mine out 3 years and 9 months ago and I'm cancer free and doing fine. Lots of others with similar stories who have had their bladders removed as well.
Before getting it removed or deciding for sure to get it removed, get to a top bladder cancer hospital. You want a surgeon that performs the particular diversion (neobladder, Indiana Pouch, ileal conduit) surgery that you prefer at LEAST 50 times a year. Enough studies have shown this to be the case and anecdotal information based on the folks who visit here also seems to align with the studies. Better outcomes and fewer side effects come from doctors who perform these surgeries over and over and over again. The hospitals they work out of also have better nursing for the care of radical cystectomy patients.
If you do have to get the surgery, there is a lot more information we can share. Look around these forums for questions from others and you can learn a lot to start.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
?)... I just wanted to welcome you to the forum and I am glad you found us since you are dealing with a persistent situation. I can't really comment about that since my type of BC was different than yours and my experience has not included BCG.
