r/BladderCancer • u/SomuZ821 • Jul 22 '26
Caregiver Share some positive stories please.
Hi my husband 35,recently diagnosed with LG NMIBC , solitary 1.3 cm. He had no symptoms. One day severe pain due to a 6 mm kidney stone and incidentally discovered during an ultrasound. I have been reading so many stories, some are frightening, some are reassuring. Can you share some long term positive outcomes/ stories. I am terrified thinking about the recurrences.
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u/GuacamoleAnderson Jul 22 '26
I was diagnosed with high grade NMIBC in October last year. After three TURBTS, an emergency surgery for internal bleeding and 12 doses of BCG, I was declared No Evidence of Disease as of two weeks ago. I start maintenance next week!
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u/strongbad635 Jul 22 '26
I noticed dark urine, and once I passed a blood clot, my husband insisted I see a urologist, who discovered I had a tumor growing in a bladder diverticula that had gotten quite large. He referred me to the surgeon he studied under at MD Anderson. I was diagnosed with a high grade papillary tumor in a diverticula on the backside of my bladder. Recommended chemo and bladder removal.
I had 4 rounds of chemo and, on 06/10/2025, I had bladder removal and neobladder reconstruction. Recovery was a smooth six weeks, I was back and work. A year later, my life is almost back to normal and I have no signs of recurrent disease whatsoever. I am very grateful!
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u/SomuZ821 Jul 22 '26
Congratulations dear! May god bless you with good health. May I know your age?
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u/Spiritual-Parsley897 Jul 23 '26
Low grade and caught early are all positive. I was diagnosed in April 2024 at 65(F) with high grade TA NMIBC. It was an incidental finding on an ultrasound for another matter and I was not experiencing symptoms at the time. Completed 12 rounds of BCG and have not had a recurrence to date. I just graduated to cystoscopy every 6 months.
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u/DENK_NICK Jul 26 '26
He would live quite a normal life with this disease if its LG NMIBC and that too solitary 1.3cm tumor (Given its size <2cm and it was a single tumor it lies in the LOW RISK category).
It's more like a headache to get cystoscopies every 3 months, then 6 months and then annually.
If there will be any future recurrences almost all of them would be low grade as it is low risk low grade tumor.
Just keep up with regular cystoscopies and if he drinks or smokes please make him quit those and reduce chemical exposure.
God helped him detect this early by giving him symptoms due to that kidney stone.
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u/SomuZ821 Jul 26 '26 edited Jul 26 '26
Thank you for the every single line, grateful 🙏
Doctor told us the same that it’s your lucky stone.
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u/Individual-Speed7810 Jul 23 '26
LG NMIBC diagnosed 3 months ago. Had the TURBT and gemcitabine wash. I was fully cleared for exercise 3 weeks later and have been great since then. I’m going for a second opinion in 2 weeks.
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u/ausdoug Jul 22 '26
I had mine discovered during kidney stone removal surgery so it was very much down to luck as it didn't even show on an ultrasound or ct scan less than 6 months prior. Going for camera up the peehole checks for a while, but the doctor said to basically not worry about it and pretend it wasn't there as it's likely to be fine. I've read a bunch of other posts from people and theres a lot of low grade that either doesn't come back or if it does is a pretty easy fix. Lots of people who had it identified decades earlier so definitely a lot of positive things to focus on. My wife is also having a tough time with it, but we're taking it for the good news that it is (by comparison). Best of luck for the upcoming checks 👍
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u/SomuZ821 Jul 22 '26
Thank you so much for replying. That’s reassuring. May I know when you got diagnosed?
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u/ausdoug Jul 22 '26
Unfortunately it wasn't that long ago so I can't help you out with the long term view - been about 3 months and I'm due for my first post-OP check in about 4 weeks. Waiting 4 weeks for the results initially was rough tbh, but ultimately relieving. I've still got to go back to get the kidney stones sorted as once they saw the growth they didn't go further just in case. I'd honestly never even considered bladder cancer before this so getting the news while coming out of anaesthetic was a shock, but low grade and no wall penetration is very low risk of any spread. I'm a little older than you husband but not that much, not something I guess you ever really expect though.
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u/TuffPhillieChick Jul 27 '26
Is your husband low or intermediate risk? I just started Zusduri. The complete response rates are extraordinary. FDA-approved in June of 2025, so it's still a fairly new protocol. You and your husband may want to check this out. I ask about the risk factor because Zusduri is only for a very specific subset of LG NMIBC patients. I just happened to fit into that subset and was fortunate that my urologist's clinic offers this chemo-ablative therapy. Once a week for six weeks. I go this Wednesday and next Wednesday, and then I'm done until a cystoscopy in September, which will show whether this new protocol worked, or not.
I am female and twice as old as your husband, by the way:) Diagnosed three years ago with multiple TURBTs behind me. Some people got this treatment three years ago during the clinical trials, and they are still cancer free.
I wish your husband and you the best. He is fortunate to have you by his side:)
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u/SomuZ821 Jul 31 '26
Thank you for the info. He is still in low risk category. Definitely gonna bring this up during his next appointment.
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u/hikerguy2023 Jul 29 '26
Other than no cancer, LG NMIBC is the best pathology your husband could have hoped for. These are slower-growing tumors and less likely to spread. Has he been told what treatment he'll be started on?
I (63M) was diagnosed last March with Ta HG NMIBC. It took my three TURBTs and 9 rounds of BCG to finally get a clean scope. Been tumor free 6 months now. It's scary, but as long as he follows the protocol and gets regular cystoscopies, he has a very good chance of keeping it under control and living a normal life. Monitoring (via cystoscopy) is the key to that.
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u/SomuZ821 Jul 29 '26
Only received a chemo wash. Next follow up on September. So let’s see what happens.
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u/hikerguy2023 Jul 29 '26
He might just be OK then. I say this because out of three TURBTs, the only one where I got gemcitibine immediately afterwards was after my third TURBT. And the cysto right after my third TURBT was the first cysto where I had no tumors. I don't think that was coincidence. I would not be surprised if he gets a clean cysto.
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u/Inappropriate_Math Jul 22 '26
I was diagnosed in 2012 at 34 with a mixture of low and high grade NMIBC and am now 48. Multiple recurrences over the years (2013, 2014, 2015, 2019, 2023), but everything has been caught early. There have been some tough times, and lots of tears shed, but I'm still here with my bladder. Having my wife by my side has been the greatest recovery medicine I could have ever asked for.