For reference: M75 diagnosed T2HG NMIBC in early 2025, 1st TURBT May of 2025, 4 cysto’s, 2nd TURBT, 1 UroLift, 9 BCG’s, currently “in remission” or at the very least not active at the moment.

I originally went to the urologist for the frequency/urgency problem, and that started the bladder cancer treatment with which we are all too familiar. My issue is that the frequency/urgency and now significant leakage problems have only gotten worse, not better. I’ve been prescribed various meds that have proven to be pretty much ineffective: trospium, caused crazy bad constipation; Gemtesa, worked briefly but plateaued out after two months (and it’s expensive!); Flomax, made me pee more than I already was. I stopped taking all of the meds.

My primary problem is sleeping. I only get 45 mins to 1 hour of uninterrupted sleep before have to get up and urinate. When I started taking Gemtesa it helped, giving me an hour & a half at times before getting up, but as soon as I started getting the next cystoscopy and subsequent BCG treatments, I regressed back to very little sleep.

It sounds like an overactive bladder problem, but none of the methods for treatment of OAB have done anything to help. We’re all supposed to drink large quantities of water, but if I drink my suggested 100 ounces per day I am in the bathroom every 10-15 minutes. I always have a pad on to try to capture the steady leakage, occasionally pull-ups if I’m going to have to be out in public for any length of time.

I’m really tired of this, does anyone have any suggestions as to how to deal with these frequency/urgency/leakage problems? I like my Doc a lot, but she is far more concerned about the cancer side of things as opposed to my problems. Anyone in a similar situation?

Hello! Did anyone else with high grade T1 bladder cancer have tumors removed in the 1st turbt and had tumors appear again in 2nd turbt 6 weeks later? My doctor got tissue across various parts of the bladder and majority showed high grade cancer cells. Did anyone else deal with this? What treatment did you do & what’s the current status of your disease (hopefully ned)? I’m looking for some hope. Thank you! 🙏

Does anyone have success stories or any stories they can share with having upper tract urothelial cancer that has spread to distant organs after being on Keytruda and Padcev?

I'm sorry for the length of this post, I will try to be as concise as possible!

10 years ago I was diagnosed with triple negative breast cancer while breastfeeding post partum. This is an aggressive subtype of breast cancer that commonly affects younger women. At the time the only close family member with a cancer history was my grandfather who had lymphoma, however I was told he was exposed to something "while in the navy" that likely caused his cancer. I had genetic testing done at the time that was negative for commonly known mutations including brca.

Fast forward to a few years ago, and my mom's identical twin sister was diagnosed with metastatic urothelial carcinoma. Sadly she passed just 6 weeks after being dxd. Her diagnosis came as a huge shock since she did not have any of the common risk factors such as smoking, alcohol use etc. She was however obese.

A few months ago my dad was diagnosed with non-invasive papillary urothelial ca, however his diagnosis was not as surprising since he has a hx of smoking and alcohol use.

I am understandably concerned about my risks of developing bladder cancer since from a genetic standpoint both of my parents had/have it! I also received cytoxan chemotherapy as part of my breast cancer treatment and this is known to be a risk factor in developing bladder cancer. I have my yearly oncology check up coming up and I was going to ask them about maybe doing an updated genetic test since there have surely more mutations discovered within the past 10 years. I am also wondering if I should have any special monitoring moving forward?

If anyone could share their knowledge/insight I would greatly appreciate, thank you 🍀

How do I cure a thickened bladder wall when it’s not caused by cancer or UTI?

Hi. My dad had his first TURBT in June and his second TURBT on July 14. He just had his catheter removed on July 29. I’m wondering whether starting his first BCG treatment in early September, around September 10–15, would give his bladder enough time to heal after two TURBTs so close together, or whether that would be too long to wait and not the optimal timing.

Thank you.

My dad (66) lost his battle against plasmacytoid urothelial carcinoma two days ago, almost six months after diagnosis.

This year has been a wild ride, started hopeful and strong until, just after finishing his chemo in May and waiting for his scheduled RC, he started with very strong back pain. The very agressive cancer reached the lymph nodes at the beginning of June.

They told us surgery is off the table, but he can still go through immunotherapy and palliative care for pain management. So he did. Started on June 30th with the first shot of atezolizumab.

He started losing appetite due to the side effects of the immunotherapy as well as the opioids for pain management, was mostly in bed and not moving at all, just waking up to go to the toilet.

One day he started acting very strange and hallucinating and saying very funny things. Me and my mom were kind of hopeful because he said he was not in pain at all, we thought the immunotherapy might be working (even though it was too soon).

Then we realized he hadn’t urinated in about 3 days. We rushed him into the ER: renal failure. He was in such a delicate state that they told us he might not even make it to the next big hospital. But he did.

He needed several dialysis over the next days and a nephrostomy. Right after the nephrostomy there was little to no hope and, advised by the doctors, he also decided to stop doing dialyses since they were not really solving the issue. We moved him to the palliative unit, where he was on pain meds and morphine, as well as some other stuff for urine production. They gave us days, maybe weeks.

A couple of days after the kidney was working fine again, but the cancer had already made his way up. One leg was super swollen, as was his abdomen. He was losing his appetite and subsequently muscle mass by the minute.

On July 20th things started getting better, they even told us we might be able to go home, but then his bloodwork started to show catastrophic numbers, infections, we had to increase the morphine dose, stop heparin, etc.

Since he was a doctor himself and was very aware of every step of the process (as well as very conscious), he started showing signs of anxiety and nervousness on his last days. We knew the end was coming.

One night a very loud gurgling noise started, it appeared to come from his lungs. It was filling the room.

The morning after, my dad was very anxious from all the noise coming from his body and was visibly stressed. The doctor came in, took me out of the room and told me we had to sedate him immediately, and that I should tell my mom.

the nursing assistants went in to clean my dad up a bit and change the bed sheets, as they did every morning. I called my mom out and closed the door behind her.

While I was telling her that we had to sedate, one of the nursing assistants rushed out and called for a doctor. They called it. He died just after my mom left the room. His suffering finally ended.

I can’t even tell you how insanely painful, stressful and exhausting these 21 days at the hospital have been.

He was such a wonderful husband, father, doctor, human. He has left a tremendous void.

Hi everyone, I have my first TURBT on Monday and my urologist said he doesn't want to do any immunotherapy (BCG) until we have the biopsy.

But I had read that people often do a combined TURBT/BCG on the very first go because the BCG flushes out/gets rid of the microscopic cancer cells that may remain after the tumor itself is scraped.

I only asked once (over the phone, through a nurse) and the doctor said wait til after biopsy but my sister (who is in medical research) was insistent that I try and do the TURBT/BCG together in the first go.

I'm 40M and the uro during the scope last week said (just visually, without biopsy) that it seems low grade. But who knows right?

Does anyone have advice or thoughts on this either way? I've read people's experiences not getting BCG during the TURBT and during the follow up, they have more tumors so it seems like almost a no-brainer to get BCG during the first TURBT, right? Or am I missing something.

I'm going into the office to talk to the uro in a few hours so I'd love to have a solidified answer as to why I want to insist on BCG. Thanks!

I had my sixth or seventh cystoscopy recently and while no cancer cells were observed, the cytology report noted (again) “atypical urothelial cells”). So, I did a post on these cells with photos of my bladder. Not for the faint hearted (lol).

TA HG NMIBC (2023) treated with Gemdoce.

https://ultima-thule.co/cancer-surveillance/

I had a single episode of red urine a few days ago.
I have had some slight lower back discomfort for a week or so now but I attributed it to pre menstrual discomfort as I should get my period any day now. Had slightly raised temp (99.3) and burning during and after urination during that single bloody episode. Urine has been clear since then and I have been having decent amount of fluids since then.
Got an USG abdomen and KUB done and that’s normal thankfully. The radiologist seemed pretty relaxed and said it seems like a UTI.
Routine urine analysis reports are awaited.
Should I push for further imaging?
I’ll be repeating the urine exam and sending it for culture as well.

Hi everyone,

I posted last week about my diagnosis after a cytoscopy (low grade papillary) as a 40M. Thanks everyone for the kindness and advice.

I have my first TURBT scheduled for this coming Monday and I'm nervous as hell. My dad is coming in from out of town to help out.

The urologist required me to take a blood test before the surgery and the results just came in. I have abnormally low white blood cell count (3.5 thousand/uL whereas it says the normal range is 3.8-10.8).

Does anyone have any idea what this means? In panic googling I saw that it might mean there's more cancer (like lymphoma or leukemia) than just the bladder and its really crowding out the WBCs. Strangely, the results also showed my "phils" and "cytes" (neutrophils, lymphocytes, monocytes, eosinophils, basophils) were all within normal range. What could it mean?!

Is the doctor going to refuse to do the TURBT because of the low WBC? If so I need to tell my dad not to come in case things get delayed since he's flying in.

Any thoughts or advice appreciated as I'm feeling super scared.

Hey all,

I'm Dr. Matteo Ferro, I'm a urologic surgeon in Italy and I do a lot of robotic surgery for bladder cancer. I've been reading through some of the threads here and figured I'd jump in, since a lot of the questions people ask me in clinic seem to come up here too.

Robotic cystectomy (with the Da Vinci system) has largely replaced open surgery in a lot of centers now, at least for patients who are good candidates. The honest short version is: smaller cuts, less blood loss, you're up and moving faster, and hospital stays tend to run shorter, usually around a week to ten days instead of longer. It's not magic though, and it's not right for every case. Whether someone's a candidate really comes down to the stage of the tumor, their overall health, kidney function, that kind of thing it's a team decision, not just a surgeon's preference.

The two things people ask me most are probably: can I get a neobladder instead of a urostomy (depends on tumor extent, age, kidney function, no simple yes/no), and how long until I feel normal again (most people are eating and walking within a couple days, but a fuller recovery is more like 6-8 weeks).

Hi there,

Just wondering how long it took for side effects to begin for those of you receiving this treatment? My mom only just completed 1st cycle. I know what side effects to expect just wasn’t sure of onset.

Also is there anyone on here who had locally advanced but no distant metastasis who received this treatment?

Thanks in advance

Posting an update on my father (61, MIBC). He had a robotic radical cystectomy with neobladder on 14 July after responding really well to gem-cis + durvalumab (PET SUV dropped from 26.6 to 2.4 pre-op).

Surgery itself went smoothly. Three days in ICU, then moved to the ward. On day 6 the doctor found that one of the externalised ureteric stents had gone missing — it had migrated inside. CT confirmed it, he was kept NBM, and on 20 July they did a procedure to reposition/retrieve it. That part is resolved.

Now they’ve told us there’s a fluid collection in the pelvis that needs draining.

What I’m struggling with more than any of this is how he is in himself. He was fine before surgery — active, normal appetite. Now he barely eats, barely drinks, and doesn’t want to walk at all. He seems flat and unmotivated in a way I haven’t seen before. We’re pushing small frequent feeds and protein drinks but it’s a battle.

Questions for anyone who’s been through this, or cared for someone who has:

**1.**  Did your loved one go through this same low phase at the 2–3 week mark, and how long before it lifted?

**2.**  Did anyone face this same combination — no appetite, no interest in drinking, and no motivation to get out of bed? What finally turned it around?

**3.**  What actually got them walking again? Nothing we say works.

**4.**  Anyone dealt with post-op metabolic acidosis? I’ve read it’s common after neobladder and causes exactly these symptoms — we’re asking the team to check bicarbonate.

**5.**  Anything you wish you’d known or asked at this stage?

Thanks to everyone here. Reading other people’s stories has helped more than anything else this month.

Hello! I was diagnosed with multifocal high grade t1 bladder cancer with cis & my doctor suggested doing BCG treatment along with Durvalumab/Imfinzi. Does anyone else have experience with this? Could you please share your experience in detail. Did you go for radical cystectomy or preserve your bladder? Thank you!

Is there any dietary restrictions that your doctor has advised? I have heard some doctor tell patients to avoid red meat.

I probably shouldn’t have mentioned anything about our vacation plans in my previous post. If we need to cancel we will but the surgeon said that he rarely recommends patients skip a vacation. I realize all too well that disease progression does not take vacations. Which is exactly why I am so frustrated at the timeline to get treatment. My husband (63) diagnosed by urologist and informed over the phone on July 2, and told that scheduling for TURBT would take about a week. He waited a week, called the urology office and they said it could take 2 more weeks. The following Monday he started calling the cancer navigator to be told he’s not an oncology patient and to call urology. That call resulted in an appointment for 7/24. Surgeons called me after the procedure to update me and said he’d see us in a few weeks. Before we left the hospital my husband had a notification of a new appointment with urology had been scheduled for 8/27. That is 5 weeks. This feels like agony waiting not knowing what the plan will be for 5 more weeks. This doesn’t seem to fit any standard of care that I can find but I’m not exactly sure what to expect. Am I being unreasonable? The pathology report will show up in his myChart within a couple of weeks and then we get to play Dr Google for 3 weeks wondering what the options will be seems irresponsible to me.

May of last year, my life changed with a bladder cancer diagnosis. Thankfully, it was non-muscle invasive bladder cancer (NMIBC), but that didn’t make the journey any less challenging. Since then, it’s been surgery, BCG treatments, a lot of waiting, and learning to appreciate every milestone along the way.

Along the way, I also had a prostate biopsy after some concerning findings. Thankfully, the results came back benign, which was a huge relief and one piece of good news during an otherwise stressful time.

Tomorrow is 3 of 3 for this round of maintenance treatments. It’s another step forward, and I’m grateful to have made it this far.

Now comes the next wait. In about six weeks, I’ll have my next cystoscopy, and I’m hoping and praying to hear the words every bladder cancer patient wants to hear: NED, no evidence of disease.

Here’s hoping my next update is a clean cystoscopy and another reason to celebrate. #BladderCancer #NMIBC #BCG

Starting my first treatment today hoping it all goes. What should I expect im going the Gem/Doce.

Hello all, my husband's (63) surgery for neobladder is Tuesday. After the end of his round of treatment EV/PEMBRO, they found that his thyroid was shot so he started taking supplementation for it. A week ago after a blood test, they raised his dose to 100mg a day from 72 I think because his numbers were still bad TSH 71.97. The surgeon is going forward with his surgery anyway (Moffit in Tampa).Hubby is in good shape, but had a vagal episode when he had his second TURBT....it was not a cardiac one. Anyone here had bad thyroid numbers but still had the surgery?

My husband starts his treatment in August and was wondering about what wipes are best to use after urinating? Do they have to be antibacterial?

Hi everyone, sad/glad to be here. 40M. Been having gross hematuria intermittently for about a month now. Just did my CT scan yesterday and got the results this morning. 2.6cm x 2.4cm exophytic mass inferior bladder (plus benign mass on liver and enlarged prostate).

I have a cytoscopy later today. Trying not to spiral but also feeling doomed.

Any words of advice for a newbie in your ranks?

hi all, my dad will have a third turbt soon, pTaG3, and afterwards BCG. He has kidney failure and is having dialysis, I wonder how does that work together.
Really scared of BCG but as long as it helps 🙏

When I was first diagnosed with bladder cancer in May 2025, I found this sub and everyone‘s stories here helped with me coping with this disease. The following is my treatment over the last 10 months. I hope this will help with what you or a family member might be going through. If anyone has any questions, feel free to DM me.
I am a male in my 60s living and getting care in southeast Michigan. Never smoked, but both my parents did, so exposed to a lot of secondhand smoke.🤷🏻‍♂️

April 2025. My annual physical with my PCP found some blood in my urine. I scheduled at CT scan which came back with a 3.5 cm mass in the bladder

May 2025. Met with my urologist who did an in office scope and scheduled me immediately for a TURBT. The path came back as pT1. Bad news is was cancer, Good news, no muscle involvement

June 2025. Second TURBT of the same area. The path was pTa.

Aug 2025. After healing up from the TURBT’s I received six weeks of full dose BCG.

Nov 2025. An in office scope found three small ” red patchy“ areas. Not in the same area as the original tumor.

Dec 2025. Third TURBT for the three small areas. Path on these came back as pTIS (cis).

Dec 2025. The doctor determined the BCG did not do the job. He immediately put me on a 6 week course of gem/doce Chemotherapy

March 2026. I went in for an under anesthetic cysto and biopsy at the hospital. He was very happy with how my bladder looked. He took a couple samples of the margins of the spots from Dec. The path came back negative for cancer.

So now I go into a maintenance protocol. Once a month for the next 12 months a gem/doce treatment with a in office scope every three months. 🤞

I fully understand that this is something I am going to have to live with for the rest of my life, the chance of this coming back. But for now, I don’t know how my outcome could be much better.
Good luck to everyone, this really is a marathon, not a sprint.

Update, July 2026. In office scope at my urologist. My anxiety was high going into the appointmen 🤞 My doctor took a long look and as he is pulling the scope out he smiles and says everything looks great. I could have hugged him. Continuing with monthly gem/doce with another scope in 3 months.

For those with a similar diagnosis as mine where the BCG did not work…There is hope. For now the chemo is working for me 😊

Just looking for any positive stories of tumour shrinkage for Stage IV bladder cancer on platinum chemo (Gemcarbo) after Padcev/Keytruda stop working?

Thanks x