Congratulations on your long long no-cancer time!! Please remember that we are NOT doctors here, just fellow patients.
My guess would be that after 10 years you are pretty safe. When bladder cancer returns after a radical cystectomy it is usually because it had already started to metastasize prior to the surgery. And sometime within the next five years or so the mets become obvious. The longer you go without, the safer you should be.
That being said, it is a good idea to see your urologist annually, especially for your peace of mind. I have NOT had a cystectomy.....just BCG for high grade CIS...and am now 11 years out. My urologist does a CT-urogram every five years (he includes me in his "thinking" and showed me the current "best practice" guidelines for urology when I resisted because of the amount of radiation.)
You should have a serious discussion with your urologist...maybe seek a second opinion on this. As I mentioned, CT scans give off a LOT of radiation and are not something to be taken often unless there is a good reason.
Again, congrats on a battle well-won!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Only my opinion as I have not had to do a cystectomy. You are probably out of the woods but, for my $$$ I would at least do a cytology even with many false positives. If positive do more tests. I presume a cystoscope is still valid with a neobladder? The jury is still out on the radiation exposure in CT scans. Maybe every 2 years? As you were stage 1 that means you probably killed this all off.
If you have any doubt by all means get the extra tests.
Thanks for sharing. We all learn from each other and I presume others will chime in.
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.
I'm curious what other doctors are doing for follow up for bladder cancer after a neo-bladder surgery several years out.
I'm nine years post surgery--Studer neo bladder, papillary, carcinoma insitu, and T1 High Grade
(High Papillary Urothelial Malignancy, T1 Grade 3). I'm seen at a urology clinic in a large hospital, on my 4th doctor. My first doctor told me this surgery resulted in a 5-10 % chance of bladder cancer coming back within five years, increasing one percent every year. I'm on my 4th doctor because each one moves on to somewhere else. This last one isn't concerned about recurrence. In fact, he said he doesn't need to see me unless I think I need it. My thought is "YOU"RE the doctor--you should be telling me." Up until this last guy, they were doing a CT scan annually.
Thanks for any advice.
Bladder cancer diagnosed Mar, 2010.
Robotic assisted laproscopic cystoprostatectomy with Studer neo-bladder, 2010.