Ditto to what Ross just said. I don't doubt your original doctor, but please get a second opinion at a major cancer center (if you told us where you lived I'm sure someone here could give you advice on facility near you) just because a very experienced bladder cancer specialist can give you some options that your personal urologist might not be able to provide.
You can read people's experiences with various pouches and diversions all over this forum, and no matter what they had, most seem to be happy with their decision. Like most, I wanted to keep my bladder as well, but now that's I'm a year out from my RC, to tell you the truth I don't miss it a bit. I don't miss it because my neobladder is so trouble-free that I never think about it. It just works.
Please let us know what you and your doctors decide.
I am sorry to hear about your previous TURBs. My experiences have been very different, so I would be of little help. Have you looked through the posts in the invasive bc section - next section after superficial? Many of the people there have had RC's and might be able to share their experiences and help you with questions to ask your uro. Or they might suggest where to go to get a second opinion.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
Sorry about some of the confusion. I had my meeting with my Doc today. As for the 4 turb's--The first was to remove as much of the tumor as possible, grade 3 agressive very large,1/3 the size of my bladder.He said it was so bloody that he had to stop.Second was to remove the rest of the tumor and try to locate the opening to my left kidney(ureter).The third was to locate the ureter and check for new growth,none found.Next were the 6 BCG treatments. After that,the fourth was to resect around the area where the opening to the ureter should be. Still could not find it so I went for an Endoplelopomy,the Doc tried to push through the bladder wall but could not because of suspected scar tissue. One week later tried agin with success. Doc put stent in,one week later my Uro Doc replaced the stent and resected around the opening to my ureter, the cancer found was around the opening, not in the ureter . He showed me the pix and explained just where the cancer was----Not what I thought he ment from his first phone call. I guess I assumed to Much. After thlking to my Doc I've decided to have my bladder removed. I'm going to have the outside bag because it seems to be less maintenance.
Duane...you must have been having some symptoms...??.and endopyelotomy is performed to relieve obstrution in the upper part of the ureter...it could be from fibrous scaring from previous surgery. You say you've had 4 TURB's? and after the second your doctor pronounced you cancer free...why the additional TURB's? What did your pathology report say on the previous TURB's?
Sure sounds like second opinion time to me.
See if you can get ahold of your pathology reports from the hospital where you had the surgery performed and we should be able to help further.
Duane when I had my Tur done they saw I my tumor and also on my left uerter there was cancer growing up that side about 8cm. What they did was put a double-J stent in in to open my ureter and get my kidney working properly so my cancer was there. I really don't think opening up the ureter would show trapped cancer. If anything putting in a stent they would find cancer if it was there. It may be a coincidence while they were doing that procedure they saw something would be my opinion. Cancer can't hide behind a stent all that does is open up the ureter same thing I had done. You said you had 4 Tur's done what were the results of the other 3?. The best thing at this point is see what your Dr has to say I mean you say a little bit of C I mean how much is a little bit?Joe
Ive been reading a lot of post but don't see one that answers my question ----yet. I had 4 TUR's after the 2nd one my Doc. said I was C-free. Now after an ENDOPYELOPOMY to put a stent, then check and replace the stent, my Doc found a small ammount of C at the opening to my ureter. My first TUR was March 12 07 the second April 16. My question is, now that the ureter is open and only a small amount was found , is it possible that it was just traped there untill the ureter was opened and not new ? My Doc is giong to talk to me at 3:30 today about options. I probably left out some details. I hope to get better at this so I can get answers or opinions to help me deal with this. I realy want to keep my bladder , but I also want to be able to make educated decisions.