7 years 6 months ago - 7 years 6 months ago#42411by mmc
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.
Hello Charlie (just a guess ?)... 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.
There are many others who have had similar experiences here who can share what they have learned and been through. Sorry you've had such a rough time again and I'm sure you'll receive more posts soon.
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
I first learned that I had bladder cancer 10 years ago. My first tumor was removed back then. I went thru the follow up cycle for about a year and a half with no reoccurences. I was transferred (thru my job) to Philadelphia. Never followed up with a new urologist I ignored a serious condition for 7 years. Since then I have moved back to florida and on April 2010 the warning came back to me (like in 2002) by way of blood in the urine. Since then I have had numerous tumors removed on 4 different occasions still in stage 0-1. My last tumor removal was in Dec 2011. Then followed up with 6 treatments of the BCG. Had a biospy done in April 2012 and everything was fine (no tumors). Did 3 more BCG treatments soon afterward. Then in the middle of June more blood in the urine. My july 18th scheduled cystoscopy was moved to july 5th and more bad news. My Urologist hinted that with all the quick reoccurences and the BCG treatments not slowing the tumors down I may lose my bladder. Right now I am scheduled to have the tumors removed on the 16th of july. I just would like to hear some thoughts and comments on what may lie ahead for me.....thanks! a new guy.