r/BladderCancer

My mother (62) has only had an ultrasound so far, no other imaging. Urologist said she wouldn’t bother doing Cystoscopy due to current partial blockage of kidneys, instead scheduling TURBT (tomorrow).

She said it’s 9cm which is freaking me out. Has anyone had a tumour that large here?

The last week all I have been doing is endless research but can’t find a lot on anyone having a personal experience of such a large mass. I don’t know if it just means 9cm length and possibly smaller width or circumstance or whatever.

I’m just thinking with that size there’s no hope for good news. The urologist is hopeful and says she believes with bladder removal it will be curative but how can she state that with only having seen one ultrasound?

Sorry for the messy post, just endless worry.

Details would be greatly appreciated.

Edit for clarification: Those who have underwent the surgery**

I had a TURBT on 1/21 they removed two thirds of a 5cm by 7cm high grade urothelial carcinoma T2. 2/28 I had a Signatera test done it was 17.5. March 13 I started treatment then got another blood test done March 20 it was 6.5. Ended up in the hospital Easter weekend so much tumor was sloughing off I got a blockage. Fast forward to present time my Signatera test was 23 on May 1st. They did another TURBT Monday and found a 5cm wide tumor my oncologist is ordering CT scans and a repeat Signatera test since the last one was done mid cycle. He said he can’t be certain if it’s new growth since I have been peeing put pieces of tumor or if it’s the remainder of the tumor since March before treatment started. Here’s to more waiting ugh.

Hi everyone!

I am just looking for some success stories really, I knkw everyone's journeys are different but I am just in such a dark place.

My mum had her turbt just over a week ago, we didnt know anything about her bladder cancer as in what they suspected, but i read her discharge notes and it said

possible stage 3b t4a N2 Mx

we dont know if it has spread yet, have an appointment next with urology to confirm everything.

I am just looking at success stories on this stage of cancer, I just dont want to loose my mum 😢 and its killing me mentally seeing her go through this.

TIA

Hi! Posted before, they found a 1 cm tumor in my dad's bladder. Today was his TURBT. Procedure itself took 38 minutes. They did not have to go deep into bladder wall. They did inject chemo in his bladder?

For some reason I thought we'd find out today if muscle invasive but I guess not. Does that come from pathology?

Does all this sound routine? My dad is already awake. Is not going deep in bladder wall a good thing or kind of doesn't mean much?

Thank you all!​

hey all. I 26F found out abt my bladder cancer 6 months ago, after turbt and pathology confirmed. it was nmibc so I should be “cancer free” but 6 months out I can’t stop wondering… how is my doctor so sure I don’t have any other tumors anywhere else? I only had a CT urogram and cystoscopy before removal, and don’t have another follow up exam until the 9 month mark. In the interim I’ve wondered if maybe the bladder tumor was secondary to a cancer that started somewhere else. Is that possible? How do you deal with that feeling without sounding like a hypochondriac to your care team? Thank you.

Bonjour, mon papa a un cancer de la vessie et je recherche un homme entre 40 et 60 ans qui se serait fait reconstruire une vessie après un cancer de la vessie.

Mon père va très surement devoir l'enlever et j'aimerais bcp qu'il puisse rentrer en contact avec quelqu'un qui l'a déjà fait pour qu'il puisse mieux comprendre à travers un témoignage ce que ça fait, lkes conséquences, les pb, les points positifs etc ...

Merci 1000 fois en avance.

I’m in immunotherapy for bladder cancer. At this point, I have NED status, but I’ll continue this therapy for up to two years. I may have to stop sooner if the side effects become intolerable.

Before the cancer diagnosis, I could eat anything. Afterward, I started losing weight because I simply couldn’t eat. I know that’s pretty normal. When treatment started, I tried eating bread, and it felt disgusting in my mouth. I had to spit it out. The same thing happened with peanut butter, hot dogs, and several other foods I used to eat.

I’m not complaining. Most of the things I can’t eat now probably weren’t that great for me anyway. But it does limit my options for a quick snack or lunch.

Has anyone else experienced this?

My bc spread to lymph nodes. I was wondering what your experience was? What was the treatment going, with what results? Kinda want to know what to expect. God bless you all

I’m new to this but my mom (62) had uti symptoms a few months ago which showed active E. coli infection. Antibiotics didn’t clear it so she had an ultrasound. It showed a substantial mass (9cm). We finally saw urologist today who said she’s fairly certain it’s muscle invasive.

We were meant to do a flexible Cystoscopy today but upon review of my mom’s notes the doc said she wants her straight in for a TURBT, and basically said bladder removal will most likely be the go to.

My mom isn’t great at relaying info and I’ve only been present for today’s consult. I’m a little shell shocked as I was naively under the impression that they couldn’t tell much from ultrasound. So to go from that to the info today was a lot.

Can anyone give me advice moving forward? I didn’t even think they could definitively say whether it was muscle invasive from one ultrasound. What questions should I be asking? And what to expect from the TURBT/biopsy? This all sounds dumb im just struggling to even know what to expect diagnosis wise and what stages or level of muscle invasiveness means what.

All the urologist said was we need to act fast but she believes with bladder removal it will be curative.

My nana (mother’s mom) died of bladder cancer 3 years ago and it was very fast. I just want to be a bit more informed this time.

Hi all,

My dad was diagnosed with bladder cancer last summer. He had removed part of the tumor and were about to do a cystectomy when they found out that the cancer had migrated to his bones.

He started treatments with emfortumab vedotin and pembrolizumab and the tumor in his bones went down significantly! However the tumor in his bladder remained stable in size for all this time (~7 months), but around a month ago they did pet scan and mri and saw that it increased. He also started having hematuria since February so made sense.

The doctors now have given us two choices. Either doing cystectomy or radioherapy. However, they said that they have noticed that when patients undergo cystectomy the cancer spreads significantly afterwards and if that won't happen to him he will be the exception. On the other hand if he does radiotherapy, there is a chance that it won't work and after that the doctors are not able to do the cystectomy anymore because the tissue becomes like a mass (?) and the tissues connect with each other, making it hard to seperate. I live in a different country so i didn't had the chance to go to the appointments with him so I am just transfering his words.

We are puzzled and don't know what is the best option to do next.. I know every case is different, but does anyone has any input or experience with what we could do to better determine what choice is better for him?

Thank you all!

I am 80/m and have been in excellent health my whole life. I exercise regularly, never smoked, don't drink...might start now. A month ago saw blood in urine first time ever. Went to my Dr and had cystoscopy and saw cancer. Had TURP a week ago and path results

Bladder tumor, transurethral resection: High-grade papillary urothelial carcinoma with no evidence of invasion in sections examined. Muscularis propria is present.

Scored Ta

Waiting to start BCG treatment.

Question. Has anyone in my age group been on this journey and how did you navigate this life changing event?

Curious if anyone here has actually been offered offered next-generation sequencing (NGS) of your tumor at any point in your treatment?

Asking because there seems to be a real gap between what’s happening in clinical trials and what patients are routinely being offered now

There are now active trials (like INTerpath-005) testing personalized mRNA vaccines + pembrolizumab ± enfortumab vedotin specifically for high-risk muscle-invasive urothelial carcinoma pretty exciting!

I hope I don’t offend anyone or scare anyone but wanted to ask if you started off with invasive or at least stage 1 and how quickly it happened. While I know everyone is different and there are no guarantees, I only ask because I started off multi focal ta high grade a hair over a year ago. Had one recurrence of 2 small low grade tumors. 2 clean scopes and cytology in row. So no recurrence of high for a year. Just wondering if this bodes well for the future or if anyone was on same path as me and suddenly after a year or two it suddenly went bad.

Well, after years of chronic pain I was getting back to work, getting my life back on track as a now single parent and I thought I'd address some health issues I had put on the back burner while managing the chronic pain. One of the things to manage was stomach issues.

So I changed GP and she was really on top of things, sent me for an ultrasound of my whole abdomen which showed a complex cyst on a kidney. To get a better look she sent me for a urinary tract ultrasound and I knew something was wrong when they spent 45 minutes, got their supervisor and asked if I've had any symptoms like pain, blood etc.

A couple of weeks later, my urologist told me it's almost certainly cancer and I've been a bit of a mess. I know the likelihood is that it will be just cut out and then we play whack-a-mole with cystoscopies from here on out, but the likelihood for someone like me who doesn't fit any of the risk factors at 29 we picked this up. I'm trying not to worry so much but I'm struggling.

Fortunately my boss is incredibly supportive as he is battling his own cancer. I just feel so alone and exhausted since finding out yesterday. I prepared for the worst, hoped for the best, got the worst. I can't do it again. I've read so much about TURBT, different types of bladder cancers, everything.

It doesn't comfort me that the prognosis is generally pretty damn good, especially with an almost symptomless incidental finding. Because the statistics haven't been kind to me so far, why would it change now?

Sorry for the ramble, thanks for hearing me out.

Everything I’ve seen says painless gross hematuria (two instances lots of blood, no infection, 59F, history of smoking) should be checked out immediately, but I can’t get an appointment for two months. 😭 Is this typical? I’m in the US, Washington state.

Has anyone had a malignant urethral mass but absolutely no bleeding and zero microscopic hematuria? Just trying to figure out how common/uncommon that is.

There’s a misconception that using protection means you’ve ‘given up,’ but in reality it can reduce anxiety, improve confidence, and help people stay active socially while they work on recovery.

For some people, leakage improves significantly with pelvic floor rehab. For others, protection remains part of the long term management plan, and that’s okay too. The goal is improving quality of life, reducing shame, and helping people regain control and confidence.

A few things I commonly discuss with patients:

• Finding protection that is comfortable and discreet

• Skin care and irritation prevention

• Bladder habits and fluid timing

• Pelvic floor coordination instead of just endless Kegels

• Nervous system tension, urgency, and fear around leakage

• Exercise and movement modifications

People are definitely not alone in this, and many benefit from combining pelvic floor therapy with appropriate protection rather than viewing them as opposites.”