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T1 High Grade Papillary Urothelial Carcinoma

4 years 8 months ago #58162 by sara.anne
Replied by sara.anne on topic T1 High Grade Papillary Urothelial Carcinoma
I agree 200% with Alan's recommendations. My urologist told me when I was first diagnosed with high grade that if it ever came to the point where he thought bladder removal was necessary he would INSIST that I get a second opinion!

Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 8 months ago #58161 by Alan
Replied by Alan on topic T1 High Grade Papillary Urothelial Carcinoma
IF in fact it is stage 1 perhaps a second opinion is warranted. For peace of mind and fresh eyes!
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.

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4 years 8 months ago #58160 by swhite
Replied by swhite on topic T1 High Grade Papillary Urothelial Carcinoma
Hi Alan,
Thank you for your response. I have sent this information to my mom to speak with the doctor further. I know there is a massive BCG shortage right now so not sure if that has anything to do with it or not. I thought his treatment seemed quite radical for only Stage 1, but the doctor assured us it was the only course of action, but now I am questioning that plan.

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4 years 8 months ago - 4 years 8 months ago #58159 by Alan
Replied by Alan on topic T1 High Grade Papillary Urothelial Carcinoma
Welcome Swhite,

And whoa!!! Your Dad has the same diagnosis I had 11 years ago (high grade papillary). I was fortunate to keep my bladder. Am I reading correctly as high grade stage 1 ? Meaning non invasive or not into the muscle? Please clarify and possibly also with your Doc. Stage 2,3 or 4 usually call for a cystectomy. The normal protocol absent other issues with stage 1 is to do BCG (immunotherapy) that you can read about on this web site.
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.

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4 years 8 months ago #58158 by swhite
T1 High Grade Papillary Urothelial Carcinoma was created by swhite
Hi Everyone. I am new to the group. My dad was recently diagnosed with T1 High Grade Papillary Urothelial VERY unexpectedly. He has already had the masses removed and begins chemo on 8/28 followed by a full cystectomy. Does anyone have any experience with this type of cancer or the chemo and procedure he is about to undergo? We are all devastated by this diagnosis and looking for ANY silver lining we can get; however, knowing the good, the bad and the ugly is extremely helpful too. Thanks in advance for any help you may be able to offer.

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