T1 High Grade Papillary Urothelial Carcinoma

4 years 7 months ago #58174 by swhite
Thank you so much for your reply this information was incredibly helpful. For some reason my dad is not able to have the neobladder he is being told he will have the Ileal Conduit due to the type of cancer he has. I am not fully understanding why and I think this is the part that upsets him the most. He is a very active man and is worried about having the bag and all issues associated with it (leaking, odor etc.). I am very happy to hear that you are doing well and wish you all of the best. Thank you again for sharing your experience and knowledge with me.

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4 years 7 months ago #58173 by Orillia
Replied by Orillia on topic T1 High Grade Papillary Urothelial Carcinoma
Hello Swhite.
The summary Sarah Anne has given you sounds very similar to the advise and prognosis I received after my diagnosis with T1 Sarcomitoid carcinoma of the bladder. I took my case to 3 top urologist/ surgeons , and all strongly recommended immediate RC. The prognosis for my type of cancer( being very rare and aggressive) was dim at best, but equally rare was to catch it early at T1 because almost all presentations of this type are found at a later stage. I had 2 resections ( the second for margins and to verify that it was not muscle invasive, which it wasn’t ) and proceeded to RC. The pathology of the second resection and post RC showed no residual malignancies and thus did not need chemo. That was 20 months ago and so far so good. I have a neobladder and I’ve become quite fond of the little fellow, since my old bladder was highly retentive . I have studied bladder cancer extensively since and am positive that their advise and course of action was right on. I hope this helps you in some way. Orillia.
The following user(s) said Thank You: swhite

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4 years 7 months ago #58172 by swhite
I definitely will!!!!

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4 years 7 months ago #58171 by Alan
Post anytime and keep us in the "loop". Everyone learns from everyone's experiences. We try and listen; be it a rant, complaint, happy post etc.

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 7 months ago #58170 by swhite
I really cannot thank you both enough for sharing this information with me! I am going to study it closely and ask many questions. His doctor was voted top doc last year so I assume he knows what he is doing, but I wanted to do my homework anyway. My dad is a VERY active 76 year old man so this is so jarring to all of us, but I know he will fight like the warrior he has always been. So again I thank you thank you thank you! I wish the best to you both!!

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4 years 7 months ago #58169 by Regor
BCG shortage should not be a reason to jump to extremes, there are other treatments out there, so there must be more to the story.

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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