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Experienced centers in NJ

2 years 8 months ago #50872 by jeffrx
Hi Joe. Yes, TURBT can cause increased urinary frequency, no doubt about it. I experienced this and it did subside after a few weeks. The BCG can cause the same problem though, so you can plan to get used to it. Best of luck with the BCG treatments.

12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks

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2 years 8 months ago - 2 years 8 months ago #50869 by Jmitchell418
Hi again.

Second opinion at Sloan Kettering in NYC was rather uneventful. No chemo suggested at this time and we'll take a 'wait and see' approach and monitor for tumors in my abdomen with CT scans. Getting into and out of NYC is not fun at all!

Had second cystoscopy/TURBT on 3/17. Dr was pleasantly surprised that there was only 2 small tumors to resect. No Mitomycin administered and I'm cleared for BCG in a few weeks pending final pathology confirmation.

I do have a question for those that can help.. Since the TURBT, I have the sensation of having to urinate ALL the time! I'm up every two hours all night long feeling as if I have to urinate. I can go a little longer during the day, but the sensation is still there. Is this typical and does it subside over time? Dying for a good night's sleep!

Joe

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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2 years 9 months ago #50718 by Jmitchell418
Just a quick update...
Surgery last week went as good as could be expected. 7.5 hours long but 100% of the ureter was removed along with several pelvic lymph nodes & TURBT to remove several patches in the bladder. Ureter was 100% involved with stage 1 high grade tumors. Bladder tumors also found to be stage 1 and high grade. On November 30, 2015, these areas were clean during kidney surgery.

Plan now is another TURBT in a month followed by BCG treatment. Chemo may or may not be administered since its not within the guidelines for stage 1 tumors, but it is returning rather rapidly and the lymph nodes near where my left kidney was are still there and could be at risk.

And a second opinion at Sloan-Kettering in Manhattan even though all I've read is consistent with what the Dr has suggested.

Joe

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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2 years 9 months ago #50677 by Jmitchell418
Thanks, Jeff. Appreciate your thoughts. The answers you provide to other posts also keep me well informed! Great job!

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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2 years 9 months ago #50674 by jeffrx
I'm a fellow New Jersey resident. You've been through a lot lately! I'm about the same age as you and am done with my first 4 BCG treatments. So far, so good. As Sara Anne said, definitely go to Sloan for the best care, or at least for another opinion. You are lucky enough to be relatively close to one of the best cancer treatment facilities in the world, why not use it?

12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
The following user(s) said Thank You: Jmitchell418

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2 years 9 months ago #50666 by Jmitchell418
Anita,

Thanks for your well wishes. Yes, they will also cuff the bladder where the ureter penetrates. This has been a bit of a shock for sure having been lulled into thinking I had RCC contained in the kidney, clean margins after surgery and a clean bladder just 2 months ago. The cystoscopy results a few days ago really came as a shock. Yanked me from the state of denial I lived in briefly.

Best of luck to Doug. With my kidney surgery I was feeling pretty good 1 week after and really good within 3 weeks. Hope he shares the same results!

Joe.

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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