All I can add at this the point is get the BEST hospital and doc you can find with so many re-occurences! While I am fortunate that I have come 6.5 years since my first DX, I have MD Anderson in Houston (I live 3 hours away close to San Antonio) as a backup if need be. If memory serves me from another thread you are in the Boston area so get the best in that vicinity. One that has a big practice in bladder cancer not men's urology as so many see mostly prostate. Keep posting, there is usually some one around to help.
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.
Hi Catherine, thank you for responding to my post. I replied on my original thread ( well it was actually another posters thread). I am grateful to have found this site! Thanks in advance for any feedback!
5 years 2 months ago - 5 years 2 months ago#47332by CatherineH
Hello and welcome. I fully understand your choice of screen name "WhatNext" after going through 7 TURBTs. I am so sorry for all the difficulties you have experienced. I don't have any personal experience with stents but I do know there are members here who have and hopefully someone will comment to that.
When were you first diagnosed? Always wondering "if/when" it might come back is emotionally draining. I hope you can get the stent out at your next appointment.
I did not have TCC, but as general advice I encourage you to be persistent in your questions because you need to understand all you can about your diagnosis. Write those questions down and go down the list one by one. Have him explain why he didn't use the mitomycin last time. Some uro's don't have the best bedside manner, so it may be intimidating to get the info from them that you need.
And, finally, if you have any doubts that your best interests are being served, consider changing doctors if that is possible. Not all uro's are experts in bladder cancer and you want one who sees a lot of cases.
Again, welcome to our forum. I am glad you found us and please feel free to post any other questions/worries/concerns you may have.
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 am new and just posted on another thread, so hopefully this is not repetitive.
I've had TCC with 7 TURBT's. The last procedure was approximately 8 weeks ago, and the surgeon placed a stent in my ureter. This is very painful, just recently easing up a bit. The plan is to repeat the cystoscopy next week and remove or replace the stent.
In the past, I was treated with BCG, but had recurrences despite that. After this last procedure I was hoping to get Mitomycin, but did not. It is not clear to me why the Mitomycin was not given, wondering if it was held because of the stent placement.
These recurrences have been very stressful for me. I am raising a family, and the uncertainty of it all is frightening. Any advise or personal experiences are greatly appreciated! Thank You!