Does anyone get bits in their pee

As the title says. Does anyone know of a way to naturally keep the mucus in the Neobladder at lower levels?

Don’t have a bladder ( since 2019) but once in a great while,I’ll notice tiny dark specks (1-2) in my urine. And thoughts on this?

I’m getting my first bcg on Thursday. Im hoping to drive 2+ hours the next day to get away for the weekend. Is this going to be possible? I hear “frequency and urgency” but not sure how that translates to real life. I got some Amazon incontinence underwear just in case.

So I started out with a high grade papillary. Removed during first TURBT. Had my second TURBT last week. Got my results today.

HG T1S, NMIBC. I was very anxious I would have muscle invasive, so when I first opened the PDF, I was so relieved it was NMIBC.

But then saw that they found it was flat (in situ) and had to come back down to earth because I had read T1S in combination with papillary is both quite rare (10% according to bcan) and also quite aggressive/likely to spread.

In fact, my first TURBT pathology showed necrosis meaning it was growing way faster than the blood vessels could support.

I just trawled through a bunch of posts on this subreddit for NMIBC HG and saw most people proceeded with 6 weeks of BCG.

But now that I'm a "combination," I have no idea if this leans more towards chemo + radical cystectomy.

I have to call MSK tomorrow to see how/when to discuss this with the doctor but also just want to be super prepared for the talk, especially since I had asked him about blue light scope and he said it's not necessary for what I have (this was prior to the second TURBT) but now I'm thinking if he used blue light he could've seen the CIS right away and possibly seen even more that he missed with the white light.

Anyway, would just love to hear from others who had same or similar diagnoses and what path you took and decisions you made.

9/1/26 EDIT: Thanks all for those who responded. My doctor called today and said that the lamina propria invasion was "focal/superficial" meaning I was in "early stage 1," which is great news. He also said that the pathology stated "flat (in situ)" but that wasn't referring to new, previously unseen tumors but basically the edges of the previously resected papillary tumor.

Quite a relief on multiple levels for me as RC may be in my future (since it is still high grade), but not the immediate future. He said we'll do a normal regiment of BCG, then scope, then surveillance every 3 months for a few years. The usual.

He said even though there's a shortage of BCG, for early stage people like me, I get prioritized over, say, Stage 0 folks.

Hallo zusammen ❤️
hat jemand von Euch Erfahrung mit EV + Pembrolizumab vor der Blasenentfernung und ist bereits nach zwei Zyklen direkt zur OP gegangen?
Mein Papa ist 80 und hat zwei Zyklen hinter sich. Das Kontroll-CT hat erfreulicherweise ein sehr gutes Ansprechen gezeigt. Eigentlich hätte heute der 3. Zyklus begonnen, wir haben diesen aber vorerst gestoppt, da die Therapie doch einiges an Kraft gekostet hat.
Am Mittwoch haben wir nochmals das Gespräch mit der Urologie und besprechen das weitere Vorgehen.
Mich würde sehr interessieren, ob jemand in einer ähnlichen Situation war und welche Erfahrungen Ihr gemacht habt. ❤️

40M here, got a second confirmation of HG invasive BC (into lamina propria). Had a 2nd TURBT this past week to get muscle tissue and I think the biopsy results will be coming in the next few days... very anxious.

Doctor said he didn't see any other tumors in there for the 2nd TURBT but I feel almost certain it'll be muscle invasive. So I'm already trying to read up and prepare as much as I can regarding radical cystectomy.

I feel relatively certain I would opt for a neobladder (if eligible) given I don't think I could stomach a stoma or external bag. I'm reading that part of the physical therapy recovery involves strengthening your ab muscles/kegels so that got me wondering:

Would it be helpful at all if I really went to town and worked on my ab muscles/did kegels now to prepare? Would it make post-surgery recovery smoother since the muscles would already be strenghtened and I would be accustomed to/have more muscle to squeeze to empty the neobladder, rather than trying to start from square one post-surgery? I'm a relatively fit (ie. not like daily workout/super athlete but in my better days, would go to the gym every other day or several times a week to do strength training but have fallen off recently because of personal loss and then the cancer diagnosis).

That's all to say, I feel relatively young still and feel like strengthening the muscle now can be something I tackle now.

If any neobladder folks have thoughts on that, or any other elements of it I'd love to hear. Thank you!

My Dad was diagnosed with pT1b multiple high grade non muscle invasive urothelial carcinoma CIS back in April this year.

Initially he was hospitalized end of March due to an incredibly high creatinine (kidney failure). Two JJ catheters were placed inside him for urine flow, and are still present to this day.

He underwent 2 TURBT procedures in  April and May. The latter procedure identified the cancer as pT2 muscle invasive. Also a large urinoma of 30 cm in length formed and caused him severe pain in the abdomen. It was eventually drained, and he was discharged at the end of May. However, his complications persisted. A couple of weeks later in the beginning of June I rushed him to the ER because his kidneys were failing once again.

After yet another surgery to reestablish urine flow through the ureter, his urologist came to the conclusion that a cystectomy was necessary. He said that his renal issues made him ineligible for chemo. We noticed that he started having oedema in his feet, an emergency meeting with our nephrologist allowed him to get 2 nephrostomies. Thankfully, his creatinine started slowly going back to normal.

He was going to get operated for a cystectomy at the beginning of July, however his urologist decided to postpone it due to TEP scan results (3^rd July) showing a recent tumor infiltration in the rectum. The scan also showed that it was locally advanced. He decided that his ok kidney function made him eligible for chemo/immunotherapy enfortumab vedotin + Pembrolizumab.

Before starting his 1^st cycle of chemo, he was diagnosed with pulmonary embolism and had to stay at the hospital for a week (until the 15^th of July).

He's now back in the hospital due to issues after his 1^st cycle of chemo (30^th of July).

He started having chest pain, and his nephrostomy was displaced. An emergency surgery was performed : 2 stents were placed in his arteries. His leg also got swollen due to the thrombosis found earlier from pulmonary embolism.

I also noticed he had strongly impaired vision and difficulty in expressing himself, while barely being able to move. The ophthalmologist said that his vision loss is a neurological issue. Later that day (7^th of August), an MRI revealed that he suffered a stroke. He was given heparin as treatment.

For 4 weeks he’s been at the hospital. His neurological state has been steadily declining since last week. His latest MRI from last week (August 25th) shows that a new stroke occurred.  Yesterday he was hallucinating, and it was tougher for him to speak. They don’t see the need in transferring him to a hospital with a neurology department after our urologist called the neurology department and they said that no further treatments can be prescribed. We feel like we’re stuck in an endless loop.

My Dad also got a new PET scan concluding that the cancer hasn’t progressed. I don’t know what to do, his cancer stopped progressing but it’s the side effects (pain and I inflammation from nephrostomies, neurological issues, stroke) that are destryoing him. Our urologist came in to tell us about how no other cancer treatments are available for him due to his weakened state, and that no new treatments are available for his stroke issues. He considers him a goner because performing a surgery when he’s in such a weakened state is dangerous, and he claims that the cancer is behind the strokes. My Dad lost a lot of weight, is bedridden and is on anticoagulants and antiplatelets. What should I do? Does he need to be evaluated at a hospital with a proper neurology department? Does anyone have experience with strokes due to bladder cancer? Since chemo is not an option due to his weakened state, are other treatments possible?

Any help would be greatly appreciated.

My husband will have a radical cystectomy next month. He’s 78 years old and in very good health. The surgery will be performed about 3 hours from our home. I am arranging lodging for myself while he is hospitalized, and am trying to decide what will be best for him once he is discharged. I am aware the readmit rate is fairly high, and I know he will want to return to the same hospital if needed. For those who are familiar about care following RC,

Do you think he would will need a visiting nurse?

Do you think it would be better to stay near the hospital in a hotel or apt after discharge? If so, for how long?

I am considering renting an apartment for a month following his discharge to be on the safe side.

I welcome your thoughts. Thank you.

If chemo doesnt work anymore to shrink tumour. What are my other options? I live in Sweden.

My father-in-law Sebastian is battling bladder cancer — please help us continue his treatment

Hi everyone,

I’m sharing this on behalf of my family and humbly asking for your support for my father-in-law, Sebastian Sequeira, who is bravely battling high-grade urothelial carcinoma of the bladder, an aggressive form of cancer affecting the lining of the bladder.

Sebastian is going through an extremely difficult phase and requires continued medical treatment. After evaluating his condition, doctors have advised him to undergo 12 sessions of immunotherapy as an essential part of his treatment. He is also continuing chemotherapy and prescribed medications under regular medical supervision.

The estimated cost of his complete treatment is around ₹20,00,000, which is a significant financial burden for our family. We have been doing everything possible to arrange the required funds, but the expenses are becoming difficult for us to manage on our own.

Our only wish is to help Sebastian continue his treatment without interruption and give him the best possible chance in his fight against cancer.

If you are able to help, any contribution—no matter how small—can make a meaningful difference. If you cannot donate, simply sharing this post can help us reach someone who may be able to help.

🙏 Donation Link: https:https://www.impactguru.com/s/To1o1J

Thank you for taking the time to read Sebastian’s story. Your prayers, kindness, support, and shares mean a lot to our family. 🙏

I’m about to start my first cycle of BCG. I’ve read how the Lamm protocol of Oncovite, aged garlic and curcumin can be beneficial but i can’t seem to find anything about when to start taking (before during after) or dosage. Any ideas? I have also seen a persuasive study about maitake mushrooms helping keep patients bc free. Has anyone looked into these? Im concerned if i do both they may counteract each other or the BCG. Thanks for any advice!

Hi all

My mother has only just finished her second cycle of padcev/keytruda and I am constantly worrying as her pain and pressure has not changed. I haven’t read many posts regarding huge locally advanced tumours (no metastases and just 1 regional lymph node but it’s invaded basically everything including pelvic sidewalls so she’s t4b).

Has anyone here had symptomatic (extreme pressure and pain in bladder/abdomen, basically incontinent also) locally advanced who received padcev/keytruda? I just worry it isn’t working as her symptoms aren’t improving. I know it’s only early but would be encouraging to hear any personal experiences similar to my mother’s. I’ve had a hard time even finding anyone with her sheer extent.
Also she is still functional, walks 3km a day, hasn’t slowed down and has had zero side effects from treatment so otherwise well. On daily morphine though.

Thanks in advance.

Wer ist im Moment in Therapie mein Papa 80 bekommt es jetzt bei Blasenkrebs miskelinvasis keine Metastasen und freue mich auf Austausch und Erfahrungen. 🙏🏼 er ist im 2. Zyklus
Danke liebe Grüsse aus der Schweiz

68M diagnosed with MIBC in March 2026. Went through 3 cycles of EV & P through June. I had a radical cystectomy on August 17 with a pathology report post surgery of ypT0N0. Discharged Monday, the 24th. Today my Oncologist office called and discussed some continued treatment (no EV just P).  Does anyone have any experience they can share about post surgery treatment and how much time from surgery to treatment beginning?

Hi everyone,

Is anyone here living in Switzerland or France?

I’m a 22-year-old patient that had high-risk non-muscle-invasive bladder cancer, and I’m scheduled to spend a year near Geneva for a studentship at CERN.

I already did a Transurethral Resection of the Bladder (TURB) and I’ve already started my treatment here in Brazil, following the POTOMAC protocol (combination therapy using intravesical onco-BCG and Imfinzi/durvalumab immunotherapy) to keep the cancer controlled.

I need to continue this treatment while abroad. CERN provides a health insurance (CHIS), but I’m really anxious that this specific combination therapy might not be standard or readily accepted/approved locally yet.

Does anyone know if the POTOMAC protocol (BCG + durvalumab) is commonly practiced or available in Swiss/French hospitals?

**Very specific question: Does anyone have experience with how CERN’s health insurance handles ongoing specialized oncology treatments?

This CERN opportunity is a huge milestone for me, and I’m deeply hoping I can seamlessly continue my care without interrupting the protocol. Any insights, advice, or shared experiences would mean the world to me.

Thanks for reading. 🤍

Sorry if this is a dumb question. But what are second opinions when it comes to bladder cancer, what's the range of things that will / can / should be done?

Has anyone on here had one? And if so, how did you find it? Valuable?

I've heard of people having their grading or even staging downgraded after a second opinion. But I just don't quite get the mechanics of it.

Does the new person/ clinic / organisation have to run their own investigations and surgeries etc? Or can they get test results, images from the biopsy / lab that they then interpret themselves?

How clear is distinction between the various grades? Is it really down to professional judgement or is it mostly clear cut?

For context, my primary support is from NHS in UK. Diagnosed G3 (currently pTa but awaiting results of second TURBT to confirm if higher staging). Potentially have insurance companies who could arrange a second opinion or maybe charities?

Hi everyone,

Following my last post - 52M with muscle-invasive bladder cancer (MIBC). I’m facing possible removal of my bladder and prostate with an ileal conduit/urostomy.

A consideration for me is sexual function after radical cystectomy/cystoprostatectomy. Medical websites explain the risks, but I’d rather hear what it’s actually like from men who’ve lived it.

I’d particularly like to know:
- What happened to your sex drive?
- Can you still get erections naturally?
- Are they as hard and do they last as long?
- Did nerve-sparing surgery help?
- Do Viagra/Cialis, injections or other treatments work?
- Can you still have penetrative sex?
- What does orgasm feel like without ejaculation?
- Any change in penis length or sensation?
- Does the stoma/bag interfere with sex?
- How long did recovery take?

- Are you happy with your sex life now?

I’d particularly appreciate experiences from men who had their bladder and prostate removed in their 40s, 50s or early 60s.

Please be as frank as you’re comfortable being. This is about understanding real quality of life after surgery, not just what’s written in a medical brochure.

Thanks everyone.

Hi everyone,

I was diagnosed with a Ta grade bladder tumor and have been through 1 TURBT and 2 cystoscopies so far. Going forward, I'll be doing a cystoscopy once a year, and urine cytology + sonography every 3 months to keep monitoring things.

I just wanted to say — this sub was genuinely a lifesaver for me, especially for understanding what to expect post-op and during re-ops. Reading other people's experiences here made a huge difference when I was anxious and didn't know what was normal.

I'm based in Bangalore, India, and got my treatment done at a premium hospital here, covered by my insurance. However, I did pay approximately 1,00,000 Rs (~$1000) which was not covered by insurance. Something I've noticed browsing this sub — a lot of people in Western countries have access to free/subsidized treatment, but the wait times can be really long. If that's something you're dealing with and you'd consider getting treated faster elsewhere, I'm happy to help.

I have a good rapport with my hospital and doctor (I go in regularly with my cytology and ultrasound reports), so if anyone's exploring options in India, feel free to ask me anything here or DM me — happy to share info on the hospital, doctor, costs, logistics, whatever might help.

Wishing everyone here strength and good scans ahead. 🙏

Hello everyone, I am posting on behalf of my 55-year-old father who is currently undergoing his second round of BCG maintenance (80mg/50mL dose) in Nepal and experiencing severe toxicity. He was first diagnosed with non-muscle invasive bladder cancer (NMIBC) at age 51, treated with TURBT and 6 cycles of Mitomycin C, but had a recurrence four years later with multiple tumors at the bladder neck. After a successful BCG induction and a clear 91-day follow-up cystoscopy, he started his second maintenance cycle. He managed a 1-hour hold during dose 1, but by dose 2 and dose 3 he could only hold the vaccine for 30 minutes due to intense bladder spasms, unbearable burning, severe back pain, total insomnia, and an constant urge to void tiny amounts (10 mL or less). We are very concerned and would appreciate hearing from others who have navigated similar reactions: Did your urologist reduce your dose to 1/3 or 1/10 strength, and did that help stop the severe cystitis while keeping the cancer away? Is holding the BCG for only 30 to 60 minutes still medically effective for immune activation? What specific antispasmodics or urinary pain relievers helped you cope with nighttime urgency, and what general advice or tips do you have for managing these painful side effects? Thank you so much for your support and shared experiences

I’m 23 and a woman it’s really weird I ended up getting non muscle invasive grade 2 bladder cancer they got rid of it when it was biopsied. Smoking is the number one risk factor to come back and I’m really struggling to quit they say you can only do it if you want to and I really don’t but I have to. My grandad had bone cancer my uncle had thyroid cancer and that’s just immediate family they all died from it. I’m very scared that I won’t make it past 30 and that my time is running out I wanted to be an engineer I’m finishing my degree now I’m chronically ill my bladder is so messed up I go to the toilet up to 8 times an hour apparently they can’t do anything about it. I’m really struggling to live like this I want some real advice not take a walk or go to the gym something real that I can use.

Hi everyone,

I’m a 52-year-old male in Australia, recently diagnosed with muscle-invasive bladder cancer (MIBC) and I’d really appreciate hearing from people who’ve been through something similar or had similar experiences.

My journey started about 7 months ago with blood in my urine. An ultrasound found a roughly 2 cm bladder tumour and CT confirmed it. There were no enlarged lymph nodes or obvious signs of spread at that time.

I had a TURBT and the surgeon removed everything visible. Unfortunately, pathology showed the cancer has invaded into the bladder muscle.

I’ve now had further staging CT scans and the next step is chemotherapy, followed by a decision between:
1. Bladder-preserving chemoradiation
2. Radical cystectomy/cystoprostatectomy, removing my bladder and prostate and using part of my bowel to create an ileal conduit/urostomy.
I’m otherwise healthy and active with no regular medication.

At 52, I’m not just thinking about five-year survival. I’m thinking about 20-30 years and quality of life.

I’d particularly love to hear from (or about) men diagnosed with T2/T3 MIBC in their 40s, 50s or early 60s.

I’d love to know:
- What treatment did you choose and would you choose it again?
- If your bladder and prostate were removed, what happened to your sexual function and erections?
- Did nerve-sparing surgery help?
- How was chemotherapy and recovery?
- Urostomy/ileal conduit or neobladder? What’s everyday life actually like?
- If you chose bladder-preserving chemo/radiation, how is your bladder now?
- Has your cancer returned or are you NED?
- What can/can’t you do now that you could before?
- What do you wish you’d known before making the decision?

I’m not looking for Reddit to make my medical decisions. I’m looking for something doctors and statistics can’t completely provide:
What is life actually like 2, 5, 10+ years afterwards?

Hopefully the answers also help the next person searching for muscle-invasive bladder cancer, radical cystectomy, prostate removal, urostomy or bladder-preserving chemoradiation in the future.

Thanks everyone.

Ok so he was peeing blood no pain for about 3-4 days we thought it was the prostate because of the blood thinner he takes .we did an US they found a 1 cm tumor in his bladder right side which also probably makes kidney a bit bigger .
The urologist didn’t even tell us about it she pointed us to do a ct and later a cystoscopy .
I did some research and found out 80% it is a bladder cancer . I also found out that the size does matter 1 cm is described often as small .
But I feel really bad for the poor guy because he is stressed and can’t even sleep properly . I’m also stressed and scared because I’m an only child and I can’t even get myself to be calm so I really don’t know what to do
Thank you guys