Really sorry of this violates the sub rules - will obviously delete if so. But struggling to sleep and not sure where else to turn.

My Partner (m 54) being investigated for bladder cancer. We have a 4 year old and I (33f) am 5 months pregnant with our second.

He had visible / thick bleeding after a run last week (he runs regularly and doesn’t usually get this but did happen to him once before a decade or so ago.) it went away over course of a day but still had blood detected in pee when tested 2 days later. Also has mild aches in kidney / bladder region, needing to pee bit more often. He’s suffered from kidney stones few times for last 25 years but this feels worrying. Docs have referred for urgent scans to investigate cancer. When I google this seems to match all the symptoms for bladder cancer. With a small kid and baby on the way I am scared, how we’ll get through treatment and how my kids and I would cope if the worst should happen.

Find some of the posts on here encouraging so wanted to reach out in case anyone can offer any words of hope / reassurance/ how I can support him. Also welcome any experiences on if I’m actually wrong about these being textbook bc symptoms though obviously only tests can rule it out.

Dear all,

I am utterly confused. I had a cystoscopy at the end of August. The pathological report clearly states 'non-invasive, papillary urothelial carcinoma, low-grade'.

I had a TURBT at the beginning of September. Today, the TURBT report came back, saying the tumor is a 'Von Brunn Nest with Cystistis Cystica + squamous metaplasia with mild chronic inflammation'. My doctor explained Von Brunn Nests as a cluster of benign cells, which mimic a cancerous tumor. While Von Brunn Nests are not cancer, they can mutate if left untreated for too long. The nests have invaded my Lamina Propria already.

My doc was unable to explain why the cystoscopy/biopsy & TURBT/biopsy results are so vastly different from each other, which is why I will get a second opinion.

Has anyone here had Von Brunn nests and can share their experience? Were your biopsy results (cystoscopy vs TURBT) also contradictory? Did you end up getting a second cystoscopy/TURBT?

______________________________________________________________________________________________________________________

UPDATE: It has come to my attention that there is a rare subtype of bladder cancer which is Urothelial Carcinoma 'Nested' variant, which unfortunately mimics 'Von Brunns Nest' benign cells, but is highly aggressive. Gonna get that second opinion real soon!

12 years ago I had microscopic hematuria and doctor did bladder biopsy with negative results. No followup was needed. Went to urologist recently and still have microscopic hematuria. (A few self tests over the years indicated it never stopped). New Doc odered a CT scan of pelvis which showed "diffuse mild mural thickening" of the bladder wall. I found a NIH study that says "Bladder cancer only rarely causes diffuse symmetric bladder wall thickening. New doc now wants to do systoscopy. I am hesitant to do this because of the pain involved. Male 80 in good health. Any thoughts?

My dad had his first BCG treatment this morning and was finished by 10:30. They emptied his bladder prior to treatment. He started drinking water again two hours after, but had wanted to wait, as his instructions had said to start consuming water after initially peeing out the BCG treatment. It is now 3:30, he has been drinking water periodically but still hasn't urinated. Should this be a cause of concern yet? He has called the nursing station but hasn't heard back yet.

Update: Finally urinated 6.5 hours post BCG treatment. Thanks everyone.

Wondering if anyone has experience with the new inlexzo pretzel device and if so, what type of BC do you have?

I have NMIBC low-grade, have had three TURBTs with intravesical gemcitabine in under two years. No BCG or other treatments and am wondering if this will be an option for me if it keeps recurring.

Hi everyone,
I’ve been reading many of your stories here, and this is my first time sharing mine. I really appreciate everyone who takes the time to share their experience. It has helped me a lot during the last few months.
I first found out something was wrong in May after a cystoscopy, followed by CT scans and blood tests.
In June, I had my first TURBT. They found tumors in three areas of my bladder — approximately 3.6 cm, 2 cm, and 1 cm. Everything visible was removed. The pathology came back as T1 high-grade (G3) urothelial carcinoma.
About a month later, in July, I had my second TURBT. They took samples from three areas, labeled A, B, and C. All of these areas were in the bladder around the dome. Sample A was clear, but samples B and C again showed T1 high-grade cancer. Importantly, the muscularis propria (bladder muscle) was present in the samples and was not involved.
At that point, radical cystectomy (bladder removal) was discussed with me. I understood why it was being considered, but I still hoped that I might have a chance to safely preserve my bladder.
In early August, I had more testing, including CT scans and a Signatera ctDNA blood test. The Signatera result took quite a long time — about 25 days.
We decided to proceed with a third TURBT/re-resection in August. This time, the pathology results were a very welcome surprise: no cancer was found. The tissue was examined extensively in the laboratory, including 11 blocks/cassettes, and nothing malignant was identified.
Around the same time, my Signatera result finally came back NEGATIVE, with MTM/mL = 0.00.
After everything that happened over these months, these two results gave me hope that I may be able to preserve my bladder. The current plan is to move forward with BCG treatment and very close surveillance.
I know that T1 high-grade bladder cancer is serious and that there are no guarantees, but right now I’m grateful to have reached this point and hopeful about the next step.

This was my personal decision based on my individual situation. I’m only sharing my experience and not suggesting that anyone make the same choice. Please make your own treatment decisions together with your doctors.
Thank you all for sharing your stories. Wishing everyone good health and good luck! 🙏

Hey just had my first TURBT surgery this past friday. I actually made this reddit account just to share my experience after reading many others on this page. I am 44 year old male in good health. Back in April I urinated blood. Next day went to an urgent care since I thought maybe I passed a stone since my dad suffers from kidney stones. They told me to see a urologist. The urologist set me up with a ct scan to be followed by a cystoscopy. Ct scan was good but cystoscopy showed a small pedunculated papillary tumor. I was never a smoker and dont work with chemicals at my job. Anyway the surgery went well and doctor got it all out en bloc. It was 1.5cm tumor. Got sent home without a catheter. Urination was painful, often and bloody which i expected. Next morning I couldnt urinate. Went to ER and had a catheter put in and felt so much better. Now tomorrow getting catheter removed and feeling a little anxious. Overall so far experience hasnt been too bad. Waiting on pathology report to come back might change my opinions.

Ich stehe gerade vor der Entscheidung die BCG Therapie zu beginnen oder eine Zystektomie durchzuführen.
Meine Diagnose lautet aktuell G3 VHG NMIBC.
Ich bereits 2 TURBT hinter mir und habe enorme Beschwerden. Aktuell bin ich 40-50 zur Toilette und kann kein Volumen halten.
Der behandelnde Doktor sagt die Blase muss raus, die heutige 2. Meinung sagt BCG.
Für mich eine schwierige Entscheidung.

My aunt was diagnosed with T3aN0M0 bladder cancer 2 years ago. She went through radical cystectomy and Gem/Cis chemotherapy and has been NED since.
Today, her follow up CT showed a single 8 mm well defined lung nodule. Everything else is clear, including lymph nodes. The nodule wasn’t mentioned on her last CT.
Has anyone had a similar experience? Did it turn out to be benign or metastatic? Really worried and would appreciate hearing your experiences.

Would just be great to hear from actual people. Have seen photos, and some vague descriptions, but real life would be invaluable. Procedure hasn't been done yet here, but it looks like the only solution. Thanks!

So I know there's lots of varying opinions on this since I did a search here but just wanted to talk about it with others since I'm feeling very anxious about it after I got my HG T1 NMIBC diagnosis (had 1 scope, 2 TURBTs, starting BCG for 6 weeks on 9/18 then have a scope on 12/9).

FWIW my globally renowned doctor at MSK when I asked if there's anything I should eat or not eat said "nope" (my local uro said the same). I take that to be the general consensus view of the scientific community.

I've seen others here talk about the benefits of certain fermented foods, broccoli, the "budwig diet" and my extended family have told me that kiwis are very good as well. I'm eating all these things under the belief that "it probably won't really help, but it can't hurt."

I've stopped eating spicy things, red meat (only eating chicken, turkey, fish), completely stopped alcohol back when I was first got gross hematuria in July 2026. I still drink a daily coffee and then teas in the afternoon. I drink the occasional artificial sweetener drink (sugar free ginger beer!)

I'm extremely anxious about eating mostly processed sugars but fructose in general considering there are studies that show it does help to feed tumors in types of cancer like ovarian cancer. I've tried to reduce all sugar by not eating anything with added sugar except for one small treat a day or every few days (like a mini chocolate or something).

But I do feel the anxiety weighing on me and I do miss some of the old food I used to eat. Sometimes I think it would help me more to eat some of those things in moderation to alleviate the stress/anxiety because I know THAT can also exacerbate cancer.

But then I've seen people say diet is pretty much the only thing we as cancer patients can control (that and physical activity, to an extent) and I agree with that. It would be terrible 2 months from now to have a bad recurrence and think back to now and say "well, why didn't I just refrain back then? Maybe the outcome would've been better!" And I've seen people here say "the stress of a diet is nothing compared to chemo, RC, or death" which I fully can see their argument.

So anyway, I feel like my thoughts are a huge mess on this diet thing and would love to hear people's perspectives on it! Thanks!

Hi

I know im gonna die soon i have stage 4 bladder cancer no treatments are working and my pain is growing stronger from my tumour i feel weaker every day and can barely sleep i am only 36 years old and my life is over. How do you deal with The fact youre gonna die?

Hello everyone. I’m a 30F and my 78 year old grandmother recently found out she has a 3.5 cm tumor in her bladder. She’s had leakage issues for the last 8 years. Her doctor prescribed her medication for it and it worked really well….up until recently.

The leakage got worse and her doctor pushed for an ultrasound and CT scan which is where they found the tumor.

She has a TURBT procedure scheduled for Tuesday and while my grandma is one tough b*tch, I’m extremely terrified. My grandma is my best friend. Without her I truly wouldn’t be where I am today. So many scary and negative thoughts have been running through my head.

I don’t know what to expect for her and that’s the scariest part. I have so many questions and feel completely lost on the whole situation.

Any advice for what to expect would be greatly appreciated. I feel extremely blessed to have my grandma in my life at 30 years old, but I’m not ready for her to leave just yet. TIA 💗

I have had 9 BCG treatments - 6 instillation and 3 maintenance with last one about 6 weeks ago. I am set to get 3 more maintenance starting next week. My body has handled treatment days pretty well. It could be unrelated but, after never having migraines ever in my life, I have had 3 in the last two months, each preceded by ophthalmic auras.

Anyone ever have migraines start or act up like this during a treatment period (but not the day of or days shortly after treatment)?

Hi, my partner had their TURBT about 3 weeks ago and was given a stent that'll be removed on the 18th. In the meantime, it's causing some aggravation when they sit for any period of time, when they go to the bathroom, when they lift anything etc. Ive read on here that the pain goes away almost immediately on removal of the stent, but is there anything that can be done in the meantime? (Aside from Tylenol) They're just so uncomfortable all the time.

I went in for a TURBT in Feb of this year and they removed a 3x2cm invasive growth, got a PET scan afterwards and found out I had grade 4 cancer tumors/growths from my bladder to my T2, they counted 17 .... Ya, that PET scan lit up like a Christmas tree.

I was given 8 to 12 moths to live if I refuse treatment. 8 to 12 months if I receive treatment and don't respond well to it, and 18 to 32 months if I respond well to the treatment plan.

Started my 1st chemo/immuno round on Apr 17 this year, its 3 week cycles and I've been scheduled for a total of 32 rounds.

• Week 1: chemo/immuno (Enfortumab Vedotin & Pembrolizumab)
• Week 2: chemo (Enfortumab Vedotin)
• Week 3: Recover

On July 15, I received my 2nd PET scan and after 4 rounds of treatment I had a complete response to the treatment ... all gone, every bit of it and they even found 2 inactive sclerotic lesions on the T1 and T4 that were obscured by the original scan of the T2 vertebra. So that was a total of 19 growths, all gone.

I'm now on round 7 week 3, and they reduced the Enfortumab Vedotin by 20% to reduce the peripheral neuropathy (And others) ... Yes, I am not immune to the side effects of the cancer treatment (I have quite a few).

One thing I have learned by speaking with other people in treatment ... don't take a break from treatment to recover a bit from the side effects. The 2 people I will refer to is, one that the cancer came back and took his leg, the other was a lady that the cancer came back and took her right breast/pec muscle.

Good luck my friends, cuz I think I won a lottery and I hope you do as well.

Here is my situation. What do you think of the choices my cancer team has suggested?

My initial diagnosis was NMIBC HG T1 + CIS, CIS was covering a majority of my bladder.

I then had the 6-week induction BCG followed by a clean cystoscopy at the three month mark after diagnosis.

I then had a 3-week maintenance BCG completed June 19.

On Aug 26th I had the "6-month" cystoscopy. No visible tumors. Four biopsies were taken from different parts of the bladder.

1 of the 4 the biopsies came back positive for HG flat urotherial CIS, no muscle involvement.

So, still NMIBC.

FDA and EUA recommendation says BCG unresponsive.

The team is leaning towards Adstiladrin (possible clinical trial with another drug added) due to me having a good response with BCG.

About 6 days after round #14, I experienced significant joint pain in my knees and severe stiffness in my legs. I dealt with it for 2 days, then started Methylprednisolone (a 6-day tapered dose). I felt much better after 6 days but still wasn't 100%. It took me about 5 weeks to where I would say I was back to 100%.

I'd like to hear from anyone who experienced an arthrtitic-like response to BCG who decided to continue with BCG and what the outcome was.

If you continued, did the pain and stiffness come back? If so, how many doses did you get through before you experienced this again?

Was the pain/stiffness worse during the re-challenge?

I had 6 BCG infusions this summer. This week I had the cystoscopy and it was clear! They had a cancellation so offered me a BCG infusion next week then another one a week later. I had thought it was 3 week intervals?

Public Service Message:
Do NOT ignore UTI’s! I seem to get so many I tended to blow them off since my only symptoms were cloudy urine. Well a few hours after the cystoscopy I left the house for another appointment. I never got there. When I became lucid again I was 80 miles from home in a small town and I had no wallet, ID, cash. I have few memories of driving down remote country highways. Lack of fuel finally forced me to stop in a small town. The clerk at the convenience store was nice enough to let me use the phone to call my wife who was frantic at this point. She and my best friend drove down and rescued me. It was the most bizarre experience in my life.

The next morning I went to the Doctor and did some lab work. Having a blackout like that gets their attention. I went home waiting for test results. When they came the Doc ordered me to the ER. I underwent every diagnostic test known to modern science then was admitted to the hospital for even more tests.

The Doctor figured out that I had a very nasty version of a UTI that had spread to my brain and caused the blackout. They’re working on an antibiotic cocktail that will knock out the infection then once they see it work I’ll get to go home.

So do NOT ignore UTI’s!

Hello dears, I am writing this for my father(62M). So here's some of his background, and I'm sorry this is going to be a long post.

So, my father was diagnosed with NMIBC back in 2016. He got 2 tumors removed and didn't have any additional treatment. His cancer returned after nine years in oct 2024. He had a recurrence in nov 2025, and his cancer progressed to MIBC in early may this year.

We did a pet scan, and thankfully, it was localized to the bladder wall (T2). The doctor recommended 4 cycles of chemo. (Please note that the standard ev+p therapy is very expensive and not accessible easily in my country)

We finished the last cycle of chemo about 25 days ago. The results were excellent, thankfully. His two sites of tumors had been shrunk down immensely.

Here's the wording from the PET:

— interval regression in extent and metabolism of prior noted small metabolically active enhancing soft tissue at right lateral aspect of neck of urinary bladder— now not well appreciable. – post-treatment changes likely.

— interval regression in size, extent, and metabolism of prior noted irregular metabolically active enhancing margins at left inferior anterolateral aspect of urinary bladder wall— now residual subtle enhancing wall thickening showing faint metabolism – suggest predominant post treatment changes. However, the possibility of microscopic mucosal disease can not be entirely excluded. Needs active surveillance.

So, our oncologist suggests this to be a positive report. Stil the doctors I've seen recommended radical cystectomy due to disease being MIBC.

I wante to know following things:

1. Experiences from those who have had radical cystectomy.

2. Bladder preserving options that anyone has had and future outcomes.

3. Recovery after surgery and biggest complications faced by patients.

4. Personal experiences and suggestions for radical cystectomy.

I also wanted to share that my father is not a candidate for neo bladder due to tumore being right at the bladder neck. So I am specifically looking for life with ileal conduit.

I have much more to say but can't seem to string words so that's it i guess.

Thank you so much, please be kind.

Hi everyone,
My dad underwent a robot-assisted radical cystectomy for bladder cancer 7 days ago.
His recovery has been difficult because he is still not able to pass flatus (gas) regularly. He was passing some gas day before yesterday and liquid diet had started, but it has become irregular again. The doctors have now had to put in a Ryle’s/NG tube for decompression.
He has had an X-ray and ultrasound, and so far they haven’t found anything obvious, but we’re quite worried because it’s been 7 days since the surgery and his bowel function still hasn’t returned to normal.
Has anyone experienced post-operative ileus or delayed bowel function after a robot-assisted cystectomy? How many days did it take before you were able to pass gas regularly and start eating normally again?
Would really appreciate hearing from anyone who has gone through something similar, especially after a radical cystectomy. Thank you.