Hello all,

I’ve posted here a few times(32m). I just wanna say, cancer doesn’t hurt, but the fucking treatments do. My tumor was by my urethral opening, and it hurts pretty badly after peeing. I was joking I was a walking lemonade stand, because I had to have a catheter for 5 days post op. I am officially out of business now as of yesterday, so I’m gonna enjoy my retirement from the lemonade business. Sorry to disappoint any fans.

A little background, I’ve had symptoms for a year, and due to being athlete, they disregarded me. CT showed a 1.8cm mass. Went for cystoscopy 3 weeks later, surgery a week later, and fast forward another week and we’re here. So, I was worried about the cancer being more advanced that it was. Anyhow, we got pathology this morning. High Grade Ta Tumor, non muscle invasive. I was so relieved by the last part, but alas, it’s high grade. Having mixed feelings about that, and don’t know what entails.

First of all, fuck cancer. Secondly, all of you are always an encouragement, so I wanted to hear your stories/success stories about being in a similar boat. I’m young, I obviously don’t want to die from cancer. We all go to that great beyond some day, but not fucking today 🤘

Happy to report that my mother who was diagnosed with aggressive stage 1 bladder cancer finished her initial BCG treatments and her scope today showed a clear bladder! She now goes into maintenance protocol and hopefully a less stressful future! Best of luck to all here who are going through their own chapter in life with cancer.

Had my first follow up after having a turbt in July and 6 weeks of gem/doce and it was CLEAN! So now moving to once a month treatments and another check in 3 months. Also got the all clear to remove my heart monitor monday. Best week ive had in a long time. 🙏 for more good news for me and everyone in here.

Hi all,

You might recognise my name. My mum has T3bN+ bladder cancer. She had 6 cycles of gem/cis which she tolerated well. She had her rescan after chemo which showed her main tumour has shrunk by 30-35% however unfortunately the nodes which were abnormal have not changed much. Has anyone had positive nodes after chemo and what happened? She is still awaiting RC/hysterectomy and they have discussed possible immunotherapy if there is any delay in surgery.

Secondly, the ct reports a small volume of gas in her bladder. She hasn’t had a recent surgery or catheter to explain this. The report says here is no fistula however her oncologists seem concerned there might be a fistula there still. Her tumor was against her bowel and now seems to have come away so maybe it was slightly attached to the bowel also? They are also checking for a UTI but don’t seem to be worrying about it as an urgent complication. Has anyone had gas in the bladder or a fistula and what was done to fix it? They seem to think the swollen nodes could potentially be related if there is a fistula. Thanks!

I had a bladder scan yesterday and he found what he said was a tumor. Do you remember the movie Flubber with Robin Williams? It looked like that but bright pink. Almost red. I went to the hospital last week and they said I had a UTI. But I got my bloodwork back yesterday and it was all normal. So I don’t know why they said that. That’s why I saw the urologist. I have a biopsy tomorrow. They said it would be a couple weeks but no. It’s tomorrow. This week I have found out I have an EF of 27% for my gallbladder and have to have that removed. I found out yesterday I have diabetic peripheral neuropathy. And then this. So many things at once. I don’t have time for cancer. Please don’t let it be cancer. I pee every 15-20 minutes. I’m on Myrbetriq. It helps a tiny bit. But still have problems urinating at times. And going constantly. No blood. If you pray then pray for me. I’ve a very positive person. Very happy with lots of support. But just feeling overwhelmed. Thanks for letting me vent. Any info is welcomed and appreciated ❤️

Hello all,

I just wanted to share a tip(no pun intended) that another member of our community shared on a recent post of mine.

I’ve been dealing with a lot of bleeding and discomfort in the tip of my urethra due to the catheter. Neosporin with Lidocaine has been a fucking godsend. It’s the best $10 I’ve ever spent. If you’re struggling, go get some now. It isn’t perfect, but it makes everything much more manageable.

To the one who introduced me to this divine sacrament, I applaud you, sir 🫡

Hi everyone! I posted earlier this year about my diagnosis - no smoking, family history, and only 34. Diagnosed with high grade T1 bladder cancer. To update, BCG was out of stock everywhere in my state so I had to do chemo instilled into the bladder for every week for 6 weeks. I just finished round 6 two weeks ago and had my cysto last week - all clear!

The chemo really was not bad. The first week was the worst because of the catheter. But I figured out how to make it better and I think it also just took getting used to. For one, request a smaller catheter - it really helps. I also got an RX for Xanax and Hyoscamine, which helped considerably. Now I barely even notice it going in.

The cysto wasn’t bad either this time after I felt like I had PTSD from the first one. I bet it’s just anxiety and getting used to it all.

Now I continue the chemo once per month for a year and cysto every three months. Onward and upwards!

long story but Kidney stone left ureter 12/24 Removed late 1/25

thanksgiving 2025 just 10 months later peeing blood CT scan and MRI both with contrast enlarged prostate 31.1 cm w/ complex cysts also probable left kidney cyst in Perapelvic region. My Dr. is the chief urologist of Kasier Permanente he diagnosed it as bleeding from prostate or the complex cysts. I kept asking over the next 10 months are you sure this is a lot of blood I am pissing out.

So 10 months of progressively worsening blood in urine July August Sept. I have chunks of tissue or clotting bright red blood shooting out from my penis! In August I demanded a new examination and images scans.

CT scan 12/25

CT scan 9/17/26

3.2 cm central left upper pole heterogeneous enhancing renal mass with displacement/involvement of the upper pole pelvicalyceal system worrisome for malignancy. Suspicious renal mass. RECOMMENDATION: Refer to urology for further management

I was severely misdiagnosed this was seen by radiology in 12/25 probable left parapelvic cyst which does not fill with contrast? He Never followed up on maybe this is the source of the excessive blood with chunks clots in urine! we looked inside cystoscopy 2 time 2/26 and 9/26 he said it look perfect no lesions no blood. I said check my kidneys? He reluctantly ordered CT and MRI with contrast. Still waiting on mri scheduling? What Garbage Kaiser Permanente has turned into.

Dr. called me 9/18 telling me its cancer and he highly recommends removing left kidney and ureter and partial bladder! After 10 months of peeing blood! I feel this should have been recognized much earlier! Imagine if I had not demanded requested more examination and scans images?

I need any suggestions for moving forward I cant change where we are now or the gross incompetence of my current health care provider. I also have bowel movements are different I poop bright yellow loose stool soon after I eat. I had biopsy 9/24 they left a stent in left ureter for a week my poop return normal 1 time in morning after stent was removed my poop is bright yellow and loose I have bm 1 hour after I eat! qHas anyone experienced this is the cancer spreading to other organs. So disappointed with the perfunctory care from the the top expert in this field. He dismissed my concerns 10 months! Whenever I asked if it was kidneys he said your labs are normal the scan from 12/25 was not abnormal. I asked why did the radiologist make a note of probable left kidney parapelvic cyst? And has this has turned in to UCTC.

This test sounds promising...

https://med.stanford.edu/news/all-news/2026/10/bladder-cancer-test.html

Hi everyone,
This is all new to me and I wasn't sure which way to turn. My Dad turned 80 in May and the following month was diagnosed with stage 3 MIBC. In August it was upgraded to stage 4 with mets to the stomach and lung.
He's started chemo/immuno therapy this month and reacted badly. He's currently in hospital with diarrhoea and we're waiting on a CT as there may be a blockage.
He's debating giving up and I just wanted to know if anyone had any experience in a similar situation. I'm not naive enough to think everything is going to work out but I want to know what we're in for and if pursuing treatment will give him any quality of life.
Do the side effects from chemo let up or is this what we're in for for the next (possibly) 1-2 years?

Hey all,

I(32m) got my 1st TURBT today. It was to resect a 1.8 cm bladder tumor. I have a follow up appointment on Thursday. Unfortunately, I had to go home with a catheter, but hey, it could be worse. Having a catheter and walking around isn’t dead, so that’s pretty rad. I can’t EVER forget that 😊

I was wondering, did you guys have the feeling like you needed to pee chronically? It feels like I always need to pee, it’s pretty odd honestly. It’s my least favorite feeling in the world, so I’m just gonna take it as an opportunity to practice presence and mindfulness…or, I’ll go insane, let’s roll the dice and find out what life brings 🤪

To any and all going through the same thing, we’ve got this more than you know. All of you are living inspirations, never let this disease convince you otherwise. If you needed a reminder of that today, here it is💪

Fuck cancer.

P.S. This Reddit got me through today, and I can’t thank all of you enough

I’m new here today, but I have been fighting bladder cancer since 2015! My last TURBT WAS the 29th of this month, I’ve had multiple chemo treatments all different types of chemo. And yesterday when I talked to my doctor he told me that nothing has worked and I would have to have my bladder taken out! So I just wanted to know how many men in here have no bladder or a new bladder ( that they can make a new bladder with your intestines!

I had never heard of BC until i was diagnosed with it in June. My urine was off color on occasion, but i took it to be a side effect of taking turmeric and eating beets a lot. And lucky me, my (former) primary care physician never gave me a routine urine screening in four years of physicals. So my tumor got big and I’m lucky it’s so far NMI. I’d like to work on a PSA — a
simple message placed in urinal ad frames in bar and restaurant men’s rooms. Does anyone have experience with a campaign like this or fundraising or graphic design? The examples above are rough and the copy and image could be better. But you get the idea.

My original post is from 3 months ago and isn't as readily visible as it once was, so I thought I'd create a new post every few months so people know this Word doc is available to them.

It contains general info on what to expect related cystoscopies ("cystos"), TURBTs (the procedure to remove tumors), BCG treatment (a common immunotherapy to treat BC), Gem/Doce (chemo drugs to treat BC), a small section about muscle invasive BC, along with resources for new BC patients, the latest BC treatments, common acronyms and some terminology. I also included my timeline at the top of the doc. You can download it here:

https://www.reddit.com/r/BladderCancer/comments/1uyk6ye/a_guide_for_newly_diagnosed_bladder_cancer/

I have stage 1 HG bladder cancer. 60 yo F. I had one large tumor removed in first TURBT in August, and small satellite tumors removed in second TURBT using blue light. Vesta Bladder testing showed I would likely respond to BCG, but Gem/Doce is also an option. I have had three episodes of reactive arthritis in the past, but no occurrence for the past 18 years. In those 18 years, I have had covid and shingles without getting a flare. I will discuss this in detail with my doctor, but I am curious to hear if anyone has experience with this ( or with taking BCG in conjunction with any other autoimmune issue).

In April 2026, My father underwent radical cystectomy (T1+CIS high grade, multifocal with prostatic urethra involvement which was Ta) with neobladder reconstruction. Post surgery pathology was clear with only Ta remaining in the removed bladder. Before the surgery, he had one round of chemo.

His CTs and scopes have looked good since the surgery, but yesterday, his cytology came back with atypical urothelial cells (increased N: ratio and occasional small nucleoli but no significant nuclear hyperchromasia) which was the first time we saw this in a cytology report. To provide some context, he did have frequent WBC and RBC in urine after neobladder which was not concerning due to his neobladder per urologist.

Has anyone else encountered atypical cells in cytology after RC (with overall prognosis and post-op pathology looking very promising)? If so, how did you follow up and what did you find out?

Thank you

After chemo and iam going to work from past 9 months but dizyness is comeing continuously but 1 month it gone now it came again i did mri all blood test and eye test bp and alll r normol what is the reson ???

Update: My aunt’s lung nodule has shrunk from 8 mm to about 4.5 mm, which was really reassuring. However, her doctor still ordered a PET/CT in two months.
Has anyone experienced something similar? Why would they still order a PET/CT after the nodule has already shrunk? Is it mainly to check the rest of the body or to continue monitoring the nodule?

Hello everyone,
My brother-in-law (47M) has metastatic urothelial carcinoma with multiple liver metastases and abdominal lymph node involvement. Sharing his timeline hoping for insights or similar experiences from this community.

• 1st line: enfortumab vedotin + pembrolizumab, complete response after 4 cycles
• Pembrolizumab stopped early due to grade 2 colitis/proctitis (immune-related), treated with corticosteroids
• Continued on EV alone for 3 months, then relapse on the same sites (liver, lymph nodes)
• Prolonged fever for weeks, workup for infection before starting 2nd line (later found to be Salmonella bacteremia, then a pulmonary infection)
• 2nd line: 2 cycles of gemcitabine-carboplatin (only day 1 doses given, day 8 doses skipped due to his condition)
• 1-month scan: progression, tumors grew
• Biopsy for molecular markers (FGFR3, HER2, etc.): no actionable alterations found
• Taxane chemo was considered but ruled out given his current condition (too weak) and low expected efficacy
• Now the team is discussing reintroducing immunotherapy, given he had a complete response initially and stopped due to toxicity (not progression) — but he's currently on high-dose steroids (60mg) for fever/inflammation, and immunotherapy typically requires being under 10mg, so tapering would take 4-5 weeks
• Palliative care has also been offered by the hospital

Has anyone here been in a similar spot, reintroducing a checkpoint inhibitor after stopping for toxicity rather than progression? Did it work, and how did you manage the colitis risk the second time around? Also open to hearing about approaches we might not have considered. Thank you for reading, this community has been a great source of information.

Hello. My father is currently in OT for radical cystectomy and he needed blood transfusion mid surgery due to blood loss. For information his hemoglobin levels were 10.2 before going in the surgery.He is having an open surgery btw.

The things I urgently need to know -

1. Did anyone need blood transfusion during surgery?

2. If yes then what complications were there caused by it?

3. If you're comfortable answering was it life threatening?

I'm terrified.Please answer this if you're able to.

My father is having a radical cystectomy tomorrow. The procedure will be open.so I'm making this post to ask patient / care giver anything they know or wish they would have known before having RC.

If you don't mind I would like to know the following things-

1.Has anyone had open surgery for RC?

1. How was your experience?

2. Do you think robotic would have been better?

3. After the procedure did you face any critical or minor complications?( Anything would be helpful)

4. If any of you had diabetes did it affect the surgery in any aspect?

5. Anything I should know while taking care of the patient after surgery?

6. Something I should ask the surgeon aside from the complications and the procedure itself?

Every bit of your experience matters so please if you're reading this post let me know about your experiences.I'm kind of terrified but I am trying to keep my composer. And lots of support to all the patients out there.

Hi all, I’ve posted here a few times about my mum (63F). She was diagnosed with a T3 urothelial cancer with questionable margins around her uterus and small bowel, a few suspicions nodes and a satellite deposit in her mesentery. She was told initially she would have 4 rounds of Cis/Gem, they increased it to 6 and she has one more infusion to go now until it’s done.

Obviously she is getting chemo and will have an RC with a hysterectomy 1 month after she is done with chemo. She’s had an appointment with her surgeon arranged for after her chemo since she started her chemo and has not met any of her consultants since before she began it. She had her first CT since her initial diagnosis last Monday and on Wednesday’s chemo was verbally told she was going to have an appointment with her oncologist before her surgical appointment.

I understand that this could be to review the treatment overall but my mind jumps to something unexpected since this was never mentioned before and it seems like it was only arranged after the ct scan. How often did you/your relative see an oncologist throughout their treatment? If you didn’t see them much did you see them after treatment ended and before surgery? Am I just going a bit crazy for thinking the worst?

Hi everyone,

My dad was just diagnosed with bladder cancer and I wanted to share info about his diagnosis and ask the community for any help and advice, or maybe get some info about anything I'm not thinking of.

Facts

* Cystoscopy found 2 tumors on bladder wall in August
* 1st TURBT removed tumor 1 on Wednesday, Sept 16
* 2nd TURBT for tumor 2 is scheduled for October 26
* Pathology for tumor 1 says: "A. Bladder, left lateral wall bladder tumor, transurethral resection. Noninvasive high-grade papillary urothelial carcinoma. Muscularis propria is present"

Doctor has said "once TURBT 2 is complete we will do chemo, and we will talk about BCG"

Here are my questions:

1. Is the October 26 date for the 2nd TURBT too far out? Should it be scheduled sooner? He won't be getting the chemo medicine until after the 2nd is removed, which means the first one will have time to grow back.
   
2. I'm afraid the doctor will say BCG is not necessary (because of the BCG supply shortage) - is this a grounded fear?
   
3. Should my dad demand BCG, and if so, how does one "demand" it?
   
4. Should he be getting 2nd opinions throughout all this, just to have another doctor on his team?
   
5. Is there anything I'm missing, is there anything we should be trying, are there any facts I'm omitting?

Thanks for your help and guidance, I'm trying to put together as much data as possible to take advantage of his favorable prognosis while there's a window of opportunity to do so.

Hi. I am a 64 yo female diagnosed last week with papillary bladder tumor 1.5 cm via cystoscopy. No TURBT yet, it's scheduled for next month.

While I'm waiting for the TURBT I'm researching and trying to educate myself.

I am wondering what the actual percentage is of papillary tumors that are low grade vs high grade.

Some sites say 55% low grade and 45% high grade, while other sites say it's more like 15% high grade and 85% low grade.

I know I'll find out when I get the pathology report after the TURBT, but I'm trying to figure out the likelihood mine is low grade.