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T1hg NMIBC - Reoccurance

2 years 5 months ago #54607 by sara.anne
The usual convention is to state the original diagnosis. Now Alan doesn’t have bladder cancer!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 5 months ago #54606 by Hoyt
Your are T1HG now but what were you at your original diagnosis?
Did you progress to T1HG while you were covered by the BCG or were you T1HG from the start?

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2 years 5 months ago #54583 by Alan

You are where most of us have been, still looking at the monkey on our back. You are smart to be prepared in any change which is where I am at almost 10 years after DX. First, I have learned to be vigilant but, also to take one day at a time. Who knows what the URO will find upon review after 6 weeks. There is still a good possibility that the BCG will work. Easy for me to say currently however I remind myself who knows?

From all the posts I have followed over the years most folks adapt and quality of life are still pretty good even if they have a cystectomy. I am copying a book mark many of us have saved with the 3 different diversions that are usually offered. If it comes to that, you want a surgeon that has done many of these. That means at least 25-50 a year (I finally read a site that quantified that but cant find it). https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion
The links don't seem to hyperlink so you'll have to copy and paste into your browser.

Let's simply hope it doesn't come to that. Keep posting as well learn from each other.

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.
The following user(s) said Thank You: EdFlaherty, Joanne2

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2 years 5 months ago #54582 by EdFlaherty
T1hg NMIBC - Reoccurance 4 years after TURBT

Jan 2014 -- Gross hematuria, cystoscopy discovered a tumor. I had a TURBT then 6 weeks of BCG followed-up by a biopsy. Everything seemed good.

Mar 2016 -- Urine Cytology found atypical cells (not normal) had Bladder Biopsy, Bilateral Ureteral Cystologies w/ Retrograde Pyelogram. Everything seemed good.

Nov 2017 -- Cystoscopy, redness and swelling in the area where tumor was removed, biopsy ordered

Jan 2018 -- I am now starting 6 weeks of BCG as a follow-up treatment after the biopsy.

From the research I've done, and from my discussions with my doctor it seems like there is a high probability that the second course of BCG could fail and that there is a high probability that I will need to have my bladder removed.

I am trying to be prepared and Im trying to prepare my family. Is it probable that I'll lose my bladder? How bad is that and how will it effect my quality of life? When and how do I start the discussion with my loved ones? I don't want to scare them, but I think if they are prepared they will bw less worried. I also think if they know that I'm prepared and that I have been expecting "the worst", they will be desensitised and reconize this as the new normal.

Any advise?

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