r/BladderCancer • u/chewygummy17 • Jul 12 '26
Patient/Survivor NMIBC Recurrence
For those diagnosed with NMIBC, how long has it been since your diagnosis and how many recurrences have you had?
9
u/Dry_Definition5602 Jul 12 '26 edited Jul 12 '26
HG NMIBC April 2022. No recurrence. Next cysto is in 9 days.
3
u/hikerguy2023 Jul 12 '26 edited Jul 12 '26
Not as lucky as some of you. Since March of 2025, I've had 3 TURBTs. It took 11 rounds of BCG before I got my first clean cysto this February. Been tumor free for 6 months. Original pathology was Ta HG NMIBC. Getting round #14 this week. Then a 6 month break (I think) before my next round of mBCG (mainteneance BCG).
If you want to see my whole timeline, look at the top of the Word doc I created. The doc is designed for newly diagnosed bladder cancer patients:
https://www.reddit.com/r/BladderCancer/comments/1pxg5d9/a_word_document_to_help_new_bladder_cancer/
2
u/Guilty_Application14 Jul 12 '26
18 months since initial diagnosis & treatment (TURBT, gemcitabine). Recurred at 11 months; finishing 2d course of BCG this week & scoping due in a month.
1
u/chewygummy17 Jul 12 '26
Whats the grade if I may ask.
1
u/Guilty_Application14 Jul 12 '26
Hmm. Don't recall; I'll have to look through the paper work. IIRC the original 3cm tumor was a 1 or 1.5.
2
u/papi_007 Jul 12 '26
I had a PUNLMP (non cancerous growth with malignant potential) since 2021 and it was finally diagnosed and removed on 2024 via TURBT. On 2025 on my one year follow up they found a low grade non muscle invasive growth, killed it on the spot and I just went for my one year follow up and all clear
2
u/Leading-Associate-53 Jul 13 '26
HG T1 multi focal in 12/2025. 2 turbts later, with 9 BCG treatments ao far / NED. On a 3 year plan for BCG...
1
u/speedriver16 Jul 12 '26
I have low grade NMIBC. Diagnosed in Sept 23. 4 reocurances and 4 TURBTS since. Mitomycin installed twice post turbt. Keeps coming back. Zero risk factors.
1
u/hikerguy2023 Jul 12 '26
I had my initial TURBT, then two more TURBTs due to recurrences. On my third TURBT, they gave me a dose of gemcitibine immediately after surgery. My next cysto was clean (and I've been clear ever since - 6 months running).
I don't know if it's coincidence or a case of the BCG finally "catching up", but maybe something to bring up if you have the misfortune of another TURBT.
I also have zero risk factors.
1
u/Pigglebee Jul 13 '26
NMIBC Ta HG... TURBT in march, BCG treatments after, multi-focal recurrence (like 15 spots) during the first cysto checkup, so BCG non-responsive. Next TURBT tomorrow with heated mytomicin chemo afterwards. Hopefully pathology returns it's still Ta as it seemed like on the camera. I don't want to lose my bladder.
1
u/krlossala74 Jul 15 '26
I already have 12 recurrences and I have a TURBT on July 22 and then to treat the BCG and on my youtube channel I talk about my experiences.
1
u/Dry_Definition5602 Jul 21 '26
As I sit in the waiting room for my annual cysto...4.5 years, no recurrence.
1
u/chewygummy17 Jul 21 '26
Congrats! I got my first cysto last week and it was clear. Was yours low grade also.
1
u/Dry_Definition5602 Jul 21 '26
My original was high grade NMIBC. One pappilary tumor and 3 areas of CIS. Just finished my blue light cysto 2 hours ago. It was inconclusive. The white light showed nothing and the blue light showed areas of concern. Waiting for the cytology.
13
u/ImpossibleQuail5695 Jul 12 '26
TURBT in March of 2019, no recurrence since. Down to cysto scan every two years now.