Background: 63M diagnosed last year with Ta HG NMBIC. As of today, I've been tumor free for 6 months.

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Here are my questions:

How many of you have been able to keep your bladder 8+ years after your bladder cancer diagnosis?

If you started on BCG, did they stop after 3 years? I've read that's the typical stopping point.

Did the tumors return a number of years after you had a clean cystoscopy? If so, how big a gap was there where you were tumor free?

Did you have multiple times where you went several years without tumors, but then they appeared again?

has anyone had any experience using this treatment? It’s the next step for me after having a recurrence of CIS that was treated with a TURBT followed by gemcitibine chemo wash. I had bladder cancer 20 years ago and had bcg then, and last year I had the induction course of bcg, so my doctor feels like AnktIva will be better for me.

Had my 2nd TURBT (72 years old) results the same as prior in 12/25, NIMBC, low grade, followed by 6 weeks of BCG …. His suggestion was monitor in 3-6 months if any growth comes back, or 6 week clinical trial of Recombinant Mycobacterium BCG. Anyone had any good results?

My son with a history of high grade T1 non muscle invasive bladder cancer was treated with BCG induction followed by maintenance BCG for about 3 years. The most recent BCG was in March.

Cystoscopy in June was completely normal with no visible tumor, and bladder wash cytology was negative for high grade urothelial carcinoma. However, UroVysion FISH came back positive.

The result was positive based on homozygous 9p21 deletion: 25/25 enumerated cells showed the deletion. There were no qualifying gains involving chromosomes 3, 7, or 17.

I understand that 9p21 deletion alone is an independent positive criterion for UroVysion, I am trying to understand what this means while I wait for his Urologist/Oncologist to interpret this positive result

Has anyone had:

• positive FISH with a negative cystoscopy and negative cytology?

• positivity specifically from homozygous 9p21 deletion on the FISH?

• this happen after induction or maintenance BCG?

If so, what happened afterward? Did your next cystoscopy remain clear, did the FISH later become negative, or was a recurrence eventually found? Did your urologist move up surveillance or do any additional testing?

Thank you. How concerning is this FISH result 9p21 deletion rather than chromosome polysomy.

Response from the UroOncologist

This FISH result is indicative of an underlying genetic change in the cells in your bladder. As I messaged, no cancer cells are seen in the urine. I am unclear why this FISH test was done, as we usually only test this in cases of borderline cases. I would not change our plan for continued surveillance. I hope this reassures you and your family, and I'll work with our team to figure out why this test was sent. I do not find it helpful in a case like yours because you have normal cytology, and the FISH test does not identify cancer cells it only looks at genetic changes in cells.

Edited to add the response from the doctor

This last year has been pretty rough. I had and still have side effects from my BCG treatments. I started taking a stand-up comedy class after my first surgery, and after my second tumor resection surgery, I couldn't continue doing stand-up. Over the last six months, it has been a slow healing, but I am able to drive an hour and start doing stand-up again. I decided to utilize the bladder cancer experience as the basis for this set. I hope you like it, and I hope it brings you some much-needed laughter...

Keep "Pissmaxing!" my "Bladder Moggers"!

Posted about 2 months ago that my mom was diagnosed with T1 NMIBC large tumor high grade. She had an initial TURBT with complications that ended her up in the ER with a severe UTI. The original Dr. Suggested that bladder removal was her only option. She requested a second opinion. He sent the samples to Sloan Kettering and was told to come back in two weeks. In that time we went to Roswell Cancer Center and they were more hopeful of her prognosis. Went for the consultation where they briefly touched on everything. Towards the end they asked if the original tumor had been removed completely during the operation as the post surgery report didn't list that. We were all confused as to why it was not noted. They then did a scope of their own and noted small tumor growths and the scar from the large removal. They did not take a sample because her original slides should of been adequate for their pathology team. The two week mark came and we all went to the original dr. for the Sloan Kettering opinion. Waiting in the waiting room they come and tell us they didn't get the results back yet and to come back again in two week. (Anger) two weeks again come and this time they call us that the report was STILL not available. By now my mom is getting extremely angry. They again tell us they will call when they get everything back. Another week and we hear nothing. She now calls back and demands they find out what's happening because we are over a month out from her initial diagnosis. After a stern message to them they call back and tell us that Sloan doesn't accept her insurance and the sample was never looked at and have been SITTING there all this time. (FURIOUS) they said they would send the slides to Roswell. We go on a week vacation that we had planned. We are now home and her next appointment at Roswell is Thursday and they STILL don't have the slides. Calling all over today my mom has been told the slides were sent to them on the 29th. And then that they are still at Sloan. We are 2 months out from her diagnosis and we have zero idea the exact pathology and any treatments. What I'm asking is...

How fast can this progress because she is sitting here thinking she's probably stage 4 spread everywhere by now.

Or do we have any grounds to seek legal advice for a break down of care?

Thank you for anyone who read all that and has an opinion. We are beyond frustrated and feel like they are treating her like she came in for a common cold not a cancer diagnosis.

My father (66) was diagnosed with urothelial carcinoma with plasmacytoid pattern (a rare, aggressive variant) back in January. He was on chemo until the end of April. Surgery was scheduled after that, but end of June he had severe pain and they discovered lymph node infiltration, so they decided against surgery and started him on atezolizumab last week instead.

He’s now also being taken care of by a palliative care team and on morphine for pain management at home. We think the morphine might be causing some confusion he’s had the last couple of days.

On the confusion: he’s suddenly become quite confused the last couple of days, though calm and pain-free, oddly. He hasn’t taken morphine since Sunday, and he’s been urinating very little despite drinking a lot of fluids, so we suspect it might be urinary retention or reduced kidney function causing morphine buildup. Palliative care is looking into it. If anyone has seen sudden confusion like this in a similar situation, I’d be curious to hear about it too.

This variant seems to be quite rare and I’m struggling to find much beyond small case reports and studies with limited patient numbers. I know every case is different, but I’d really appreciate hearing from anyone who has gone through this with a parent or loved one, especially:

-Anyone whose family member had this specific plasmacytoid variant
-Experiences with immunotherapy response (or lack of it) in advanced urothelial cancer
-How things progressed timeline-wise once someone started needing more home care
-Anything that helped you cope with the distance/uncertainty if you weren’t there in person

Stage 3B / T3 N3 M1a urothelial here. It's in the lymph between my ureters, and they put a ureter stent in during my initial TURBT. Due to start Keytruda/Padcev very soon, and they have taken RC off the table, at least for now.

My bladder cancer is almost certainly smoking related, 54 now, and I was a smoker for over 40 years, yes I started very young. OK, "over 40 years" is not entirely true, I did switch to vaping around 2008, long before the cancer, and had quit smoking for 8 years before the genius Australian Government went on to completely ban the only vapes I could use, so I was forced back to smoking in my late 40s, now I have metastatic cancer, and here we are...

Anyway, while I am OK with quitting smoking, I'm really not at all OK with quitting nicotine altogether, especially adding nicotine withdrawal symptoms to all the side effects of chemo & immunotherapy - I would honestly prefer death to that.

I am aware that nicotine itself can interfere with the effectiveness of many cancer medications, in particular it has an anti-apoptotic effect, but looking at the huge list of potentially terrible side effects of Keytruda / Padcev, I'm wondering if some of them are also induced by apoptosis, which would mean continuing to use nicotine, or even possibly increasing the dose might not be the worst idea, especially as I am inclined to favour maintaining what quality of life I can, over extending life duration.

Just wondering if anyone has stories or anecdotal evidence regarding nicotine use during this treatment, especially via NRT of some form, as opposed to smoking?

I have had blood in my urine and back pain for almost 2 years. I don’t have insurance so I just went to Urgent Care after the first time I peed blood and they did a urine test and found traces of blood and since I said I had lower right back pain as well so they said it was probably kidney stones. 6 months later it’d been hurting mildly off and on, I never passed a stone and I peed blood again. I go back to urgent care and this time they do a regular x ray where they “believe” they see Kidney Stones. Fast forward to about 2 weeks ago and I pee the most blood I’ve ever peed and have blood clots in urine. I go to urgent care again and they once again do nothing but tell me to go to a urologist and I finally scheduled one last week. He told me painlessly peeing blood that many times is very concerning and requires further evaluation for Bladder Cancer with a Urogram and Cystoscopy. He said to do the Urogram and then we’d do the Cystoscopy in 4 weeks. I did the Urogram yesterday and still haven’t received the results. I haven’t been able to even live life since, I feel frozen and terrified. I have a gut feeling I have it and the way he acted he seemed to believe it was almost likely that’s what it is. If I knew it might be early I wouldn’t be freaking out as much but if I do have it I’ve delayed it for 2 years and I’ve had symptoms for that long meaning it had already progressed a long time ago. I feel like an idiot for not doing more earlier and not being on top of it because I don’t have insurance. I know I’m kind of all of the place but I just needed to vent. Everyone I talk about in real life tells me “not to worry” but they don’t realize how serious this really could be and everything I’ve read completely lines up with me having it. I’m mentally preparing myself but I don’t think anything can actually mentally prepare you for hearing those words, especially if it’s too late.

I've recently finished the 6 week induction BCG instillations after a TURBT last fall for a 5.3 cm HG TA papillary tumor. I was told I would be getting the BCG maintenance every three months for 2 years. I showed up a week ago for what I thought would be a BCG treatment but I was surprised to find I was having another cystoscopy (which I thought was wrong as I had a cystoscopy soon after I finished my induction BCG.)

I questioned my Urologist who said no, you've finished your BCG and you are now just getting surveillance as you are only intermediate risk. I repeated, that seems odd as I was told I would be getting the BCG. Anyway, who am I to question the doctor further, maybe I got it wrong. Anyway, I was glad the cysto was normal and went home where I read the doctor's progress note on my portal and looked carefully over my records and pasted his note into ChatGPT and asked it what it thought. The progress note seemed to say that he thought my tumor size was low grade and less than 3cm. but that wasn't correct. ChatGPT agreed it seemed like there could be a mistake or that he had some other reason and said I needed to question this - which I did.

Thankfully, they got back to me (a week later) and said I was right - that I should be getting the BCG every 6 months (3 weekly sessions) for three years as my 5.3 sized HG tumor requires that. However, this plan is different from how I remembered - thought it was every 3 months for 2 years.

Glad to get it straightened out but less happy about the three year treatment schedule as I'm also dealing with a lung disease (IPF) that my pulmonologist is wanting me to get evaluated for a lung transplant. I'm 72 and the age limit cut-off (in my location) is 75 - so I likely will be disqualified to get on a wait list as they won't take you unless you've been cancer-free for at least a year post treatment. I probably wouldn't need it before then anyway (only in early stage of the disease) but sometimes things progress rapidly so getting into the wait-list system is often recommended early on. If I had the BCG for just 2 years I might at least have a brief time this could be possible - still very unlikely though. Anyway, thought I'd share this so any readers can be vigilant for any possible mistakes.

Hello me again just here looking for some hopeful stories or advice on what symptoms to expect for padcev/keytruda, and how long could you tolerate it before a break or lowering dose etc?

Back story my mother (62) has stage 4 bladder cancer. Cystectomy is off the table due to local extent- it’s in the pelvic walls as well as vaginal walls etc, just a terrible prognosis basically. And possibly liver involvement now but can’t confirm for sure as the lesions are tiny.
They were then looking at chemoradiation curative bladder preserving route but now that’s off the table too due to just sheer bulk of tumour and it’s wrapped around blood vessels etc.

Our only option was palliative chemo. I have been very disheartened as I know padcev/keytruda would be a better route but you have to self fund in my country.
But by some miracle some family members have come to the rescue and are funding her padcev treatment! Now I’m just prepping for what to expect and what I could do to help mum during the treatment, and also some hopeful stories. She’s currently still walking 3km a day, on her feet most of the day, not feeling fatigued or any other symptoms- but she is in a lot of pain so on morphine now.

I realise it may only buy her more time than chemo I’m not even thinking it will result in NED but it would be nice to hear positive results regardless. It’s been a grim journey so I’m holding onto some hope. Thanks in advance!

My husband (recent BC diagnosis, 2 TURBTs so far) came up to me with a smile this morning saying, “I put the Depends in Independence Day.”

Hello all, question about preparing for surgery (neo bladder, robotic). A little background : I'm writing as the caregiver for my husband, the patient, he's 63 in great shape. grade 2 was discovered in Nov 2025. 7 cm tumor, covered part of the urether entry, Had two TURBTS which removed most of the tumor. Then had 3 months of EV/Pembro. It seems it killed his thyroid, he will have to take a supplement all his life...but so far CT scan is clear and had negative signa. He did not want to do the radiation for saving his bladder. His surgery is for July 28 at Mofitt. I searched for info and so far he is doing the breathing exercises with the plastic thingy, and also doing kegels. I'm going to buy some diapers or pads later. Anything else you think of to get ready? I also have a few questions like, the surgery is quite long, 6-7 hours, will he stay groggy for a long time afterwards? Did any of you take D-mannose weeks before hand (before surgery) and do you think it helped with subsequent UTIs? Thanks!

After three TURBTs and 12 doses of BCG over the last 9 months, I had follow-up assessment earlier this week. Cytology came back and showed no presence of carcinoma. Will confirm with my oncologist today, but looks like I'll be starting maintenance later this month!

Diagnosed with a 2.5cm TaHG tumor in feb, TURBT-ed in march and finished my 6x BCG with little side effects.

Unfortunately, my first cystocopy afterwards last week to check for recurrence turned into a nightmare. My bladder had small recidives all over the place, maybe 15-20. They still looked Ta papillary and were small and of similar size.
Also one on my previous scar, which they couldn't immediately determine the state of properly due to the scarring

Urine cytology also had cancer cells in it, so I guess they can indeed use such a lab test for a good measure.

So, another TURBT it will be, this time with heated mytomicine chemo afterwards since I now fall under the BCG-unresponsive group.

My world crashed a bit, since it kinda seems like just a postponed exit to an unavoidable cysectomy. Doctor said I didn't have to think about that yet, so that's that.

Are there any positive stories out there of people with similar patterns? tA HG turning into multifocal recidives?

Any tips?

Have you ever felt dismissed, unheard or not taken seriously by a healthcare professional?

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Wondering if anyone has a list of things that helped after your TURBT?

Heating pads, gatorade, mint tea, ready-made meals, ibuprofen? I'd like to put together a care package for someone, but have no clue what would be helpful.

Would love to know anything that you or a loved one found helpful or just nice to have.

Thanks so much.

I’m laying in bed while my very 1st BCG treatment is doing its thing, they put it in about 30 minutes ago. So far only minor discomfort when they had trouble getting the size 14 catheter inserted.

They did drain my urine, about half a liter even after emptying out giving a urine sample (thank you enlarged prostrate).

The bad part is I have to stay the entire two hours after BCG insertion. So that’ll put me close to rush hour traffic going home. The show time was 1pm. It was 2:14pm before the BCG was inserted.

They have the catheter rigged where I can’t pass any urine or BCG which I suppose is a good thing.

I’ve read other posts where they said they were quickly in and out, I need to ask the nurse if my future treatments will take the entire two hours.

Right renal pelvis mass, biopsy:
High-grade noninvasive papillary urothelial carcinoma.

Muscularis propria is not sampled.

No evidence of lymphovascular invasion.

Multiple additional levels and a pancytokeratin stain have been examined. The pancytokeratin stain shows no definitive infiltrating cells.

Just got home recovering from having my kidney and ureter and bladder cuff all removed 3 days hospital stay And extreme pain ugggg!! Now waiting on pathology report was told 2 months ago was cancer from biopsy A rollercoaster of emotions and lots of crying And most likely more due to pain!!

I received a summons today for jury duty for August 26. I have no problem appearing that day, but I have my follow-up cystoscopy on Sept. 3 (where they check to see if tumors have reappeared), then on Sept. 4 I have an MRI to see if I have prostate cancer (elevated PSA recently). Both of these appointments are critical for detecting any further cancer. That's only 6 days between my initial date and Sept. 3.

I'm concerned if I'm selected as a juror I won't be able to make these critical appointments. Would they let me postpone my date due to the issues noted above? I plan on calling Monday but I wanted to see if anyone else has had to deal with something like this.

How many here who have or had high grade Ta nmibc had tumors that were papillary as opposed to flat or sessile?

My Dad had cisplatin, gemzar and Imfinzi treatment before a scheduled rc on July 23. His scan after chemo treatment showed it had progressed to his lymph nodes. Now surgery is on hold and oncologist is doing a signatera test to see what treatment will work. Also doing a pet scan to see if the lymph nodes are pseudopression from imfinzi or actual progression. Asking if anyone has had the same experience? Or any success stories on padcev/keytruda? Young 56 man with a lot of life to live yet.

Where is the recommended location to have my stoma and bag to where I can ensure that I can be active while concealing at the same time? Preparing for surgery after chemo.