Is CT scan standard care for Papillary urothelial bladder, high grade

Posted by skind6 @skind6, Jun 18 1:38pm

Hi!
Im a female early 60's, who is new to this group. Very grateful to have this group. Challenging to find this support for bladder cancer.
My polpys were removed, followed by 6 wks bcg, urine cytology-negative, CT scan with & without contrast-clear, cystoscopy-clear, and 3 more weeks of BCG, urine cytology-atypical cells, and a second cystoscopy-clear. My urologist (fellowship in bladder cancer) at a large network is ordering another CT scan . This CT scan would be apx. 11 months from my previous CT scan. Nurse said CT scans were stand of care every 1-2 years. Anyone else receiving regular /annual CT scans? Believe small polyps are challenging to detect on a CT scan, is that correct? Want to be sure it is warranted as opposed to Dr. ordering another diagnostic procedure...Thank you very much in advance for an comments and best of luck with your treatment.
Take Care, 🙂
S

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Robert Steen | @steenrl | Jun 19 8:48am

I believe it is standard care. I'm under treatment with Mayo and have had CT Urograms every threee to six months in the beginning and now once a year. I'm in a different situation from you; I've had my bladder removed and replaced with a neobladder but they still do the scans. If I recall; they will continue this for another year or two just to make sure nothing has returned. Good luck with your treatment.

Sue | @swh | Jun 19 10:58am

In reply to @steenrl "I believe it is standard care. I'm under treatment with Mayo and have had CT Urograms..." + (show)

How did the neobladder surgery go and life with it since?

Robert Steen | @steenrl | Jun 19 2:23pm

The surgery went very well; my surgeon was Dr. Mark Tyson and his team at the Mayo Phoenix clinic in March 2022. Dr. Tyson is a pioneer in robotic neobladder surgery (two tiny incisions and no scar on my belly). He and his team at Mayo are fantastic. The surgey took about 5-6 hours and I was 5 days in hospital post-surgery. Worst part was the catheter; once that was removed I felt fine. First few months I needed to wear adult diapers (Depends) all the time and went through 2-3 a day. After that I was able to go without any during the day and only wear them at night now. I look perfectly normal and can go about my day as if nothing has changed. Only occasional incontency (much less of an issue than a menstral period). I swim, jog, exercise, hike and do all of the activities I did before. I am very happy with the result and would recommend a neobladder to anyone.
I am happy to share my experience with you if you go down this road and have any questions at all.

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