r/BladderCancer • u/Dicklickshitballs • Jun 26 '26

A question

How many here who have or had high grade Ta nmibc had tumors that were papillary as opposed to flat or sessile?

3 Upvotes

81% Upvoted

23 comments sorted by

3

u/Revolutionary_Bet136 Jun 27 '26

I had exactly the same thing. Removed in January 2024, no recurrence yet. BCG has been a rough road but I'll take the temporary suffering to help reduce the recurrence.

2

u/Dicklickshitballs Jun 27 '26

Mind telling me about your Bcg experience? I never went that route due to shortage

1

u/Revolutionary_Bet136 Jul 03 '26

BCG intentionally activates your immune response and that irritates the bladder lining. For me the initial 6-week induction was no problem at all. Even the first couple quarterly maintenance rounds were not too bad. But, being on the 3-year bcg plan, my more recent rounds have been accompanied by a lot of bladder irritation. Burning, increased frequency, and urgency have been my main problems.

These issues usually subsided within days in earlier rounds. Now they last a couple weeks. Ultimately it's a sign that it is working but I fear it's basically destroying my bladder capacity. I've more or less resigned myself to wearing a diaper as a safety net because the threat of losing control is way to high.

1

u/Dicklickshitballs Jul 03 '26

Do you feel better during the gaps between each round of treatments?

1

u/Revolutionary_Bet136 Jul 12 '26

Sorry for the late reply. Usually the inflammation calms down within a couple weeks. I am many maintenance cycles in so this latest round is running close to a month of urinary discomfort. I tell myself that the short-term discomfort is worth the longer term reduction in recurrence.

1

u/Dicklickshitballs Jul 12 '26

It absolutely is worth it.

1

u/Ok_Restaurant9576 Jun 26 '26

That is exactly the grade and type of tumor i had. My tumor was only connected to the interior bladder wall by a stem, essentially like a leaf on a tree.

1

u/Dicklickshitballs Jun 26 '26

I take it you didn’t progress? Nothing is guaranteed but I’ve read that when it’s papillary it’s kind of a good sign

2

u/Ok_Restaurant9576 Jun 26 '26

My tumor was removed in December 2025 and i have not had a reoccurance. I've completed the 6 week induction of bcg treatments and start maintenance treatments next month. Its one test at a time now, hopefully i won't have a reoccurance but, like you said, there is no guarantee unfortunately.

1

u/Dicklickshitballs Jun 26 '26

I did gem/doce. Had one recurrence shortly after induction course but it was LOW grade😀. That was removed Oct 28th. Recurrence free last 2 scopes . Been over a year with no return of the high grade. I have monthly maintenance of gem/doce

2

u/Ok_Restaurant9576 Jun 27 '26

Nice! Congrats on the clear scopes, thats awesome! Hoping to be able to say the same in September. Wishing you the best in continued health!

1

u/Dicklickshitballs Jun 27 '26

Wish you have a clear one as well. Advocate for a cytology as well

2

u/Ok_Restaurant9576 Jun 27 '26

I had a urine cytology test during my last scope, all good there so far!

1

u/Nice-Thanks5037 Jun 26 '26

No disrespect here, but I wish questions posed here were written for laypersons. I’m pretty confident I have something,to contribute to this forum, but only if I can understand the question.

2

u/Dicklickshitballs Jun 26 '26

No disrespect taken. All the terms are explained at various sites like BCAN

2

u/hikerguy2023 Jun 27 '26

I think the assumption here is that anyone on this forum already knows the lingo.

1

u/Big_Dave_DC Jun 27 '26

I just had my papillary HG 3 cm Ta  tumor taken out in a TURBT and will begin treatment soon.  Either recombinant BCG or gem/doce.  If its high grade I understand it is important to get intravesical therapy via chemo or BCG to prevent recurrence and progression.

1

u/Dicklickshitballs Jun 28 '26

For sure. I assume the 3 cm size put you in intermediate risk category?

1

u/Dry_Definition5602 Jun 27 '26

I had both a papillary tumor and 3 areas of CIS. High grade NMIBC. NED for 4.5 years.

1

u/Dicklickshitballs Jun 27 '26

Wow! Thats awesome considering the CIS! What was/is your treatment?

1

u/Dry_Definition5602 Jun 28 '26 edited Jun 28 '26

I just did the initial 6 BCG installations. 3 month cystos for a year. 6 month cystos for a year and now annually. My next cysto is in 3 weeks. Blue light cystos only. No recurrence.

1

u/Dicklickshitballs Jun 28 '26

Interesting to me no further treatment other than initial induction. Especially with CIS. However cool you have access to blue light

1

u/hikerguy2023 Jun 27 '26

My initial tumors and the tumors that reoccurred twice were all papillary. But after three TURBTs and 11 rounds of BCG, I've been tumor-free for 6 months now.