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Experienced centers in NJ
Hello,
Recently diagnosed and looking for help with a plan that will get ahead of this! (aren’t we all?). Here’s my story: I’m a 44 year old male that went to urologist last Oct due to bleeding. CT scan revealed a 6.5cm left kidney tumor. Ureteroscopy in Nov and subsequent path indicated renal cell carcinoma. On 11/30/15, I had a left nephrectomy…and then the surprise. Kidney pathology indicated stage 1 high grade transitional cell carcinoma. My urologist wasn’t concerned that I still had a ureter remaining, so I got a second option to see if the surveillance plan developed by him was sound. It wasn’t. Second Doc highly recommended removal of the ureter and a cystoscopy in advance. The cystoscopy was completed on 2/10/2016. Tumors growing on the ureter as it penetrates the kidney and several tumors sites throughout the bladder. Ureterectomy scheduled for 2/17/2016 long with TURBT and more pathology. I’m sure this is the beginning of my journey.
I’m reading a lot of good results from BCG treatment and that’s what’s being considered after surgery next week. I’m a bit cautious that my first urologist seemed to get out of his comfort zone and I’m worried about constantly chasing this. Maybe it is what it is, but do I benefit any from taking myself to Sloan-Kettering or another center?
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!9 Replies-
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
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!
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!
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!
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
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!
Best of luck, Joe. You were smart to get another doctor’s opinion. Glad you are having the ureter out. Are they also taking a cusp of the bladder where the ureter joins the bladder? My husband, Doug, will be having his kidney, ureter, and cusp of the bladder removed within the next month. Scary business!
Anita
Anita
Forum Moderator
Caregiver
Sara,
Thanks for your advice and for the quick reply! I’ll certainly be seeking additional advice after surgery next week.
Forgot to mention that my name is Joe.
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
YES!!!! Does that answer the question?
Woops….sorry to see you here. but you are very welcome. And YES, a second opinion at Sloan-Kettering would very much be in order. You do not have “garden variety” bladder cancer, but instead complications that it had spread to your ureters and kidney. You need to be seen by specialists with lots of experience in treating unusual cases.
For high grade bladder cancer, BCG is the treatment of choice and has enabled many of us to keep our bladders and remain cancer-free. Whether it is the appropriate treatment in your case should be a discussion you have with the experts.
Wishing you the very best.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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