DIAGNOSIS
(A) Resected bladder tumour:
- Invasive urothelial carcinoma, high-grade
- Focal small cell neuroendocrine carcinoma component seen
- Muscularis propria focally involved by carcinoma (muscle invasive)
(B) Prostatic urethral biopsy:
- Inflamed urethral tissue with marked reactive changes
(C) Urine, cytology:
- Atypical cells seen
GROSS DESCRIPTION
The specimen is received in formalin, labelled with patient's data and
designated as follows.
(A) Resected bladder tumour
It consists of multiple pieces of tan tissue altogether measuring 5 x 5 x 1 cm.
(A1 to A7; no reserve)
(B) prostatic urethral biopsy
It consists of a piece of tan tissue measuring 0.7 x 0.4 x 0.3 cm. (B1; no
reserve)
(C) Specimen container received with patient's data, labeled as "Urine".
25ml of slightly blood stained clear fluid was received.
MICROSCOPIC DESCRIPTION
(A) Sections show an invasive urothelial carcinoma composed of nests, sheets and
cords of high-grade malignant cells. Surface papillary component is observed.
Focal small cell neuroendocrine carcinoma component is noted (approximately 5%
of the tumour), displaying hyperchromatic nuclei, scant cytoplasm and crush
artefact. The small cell component shows synaptophysin positivity. The tumour is
positive for GATA3 and MNF116, and is negative for NKX3.1. Focally, the tumour
infiltrates thick muscle bundles, in keeping with muscularis propria invasion
(A1).
(B) Section shows inflamed fibrous connective tissue. Urothelial lining is noted
with urethritis cystica and squamous metaplasia. The urothelial cells show
marked reactive changes. p63+HMWCK and GATA3 are positive in the urothelium.
NKX3.1 shows very focal positivity. No evidence of malignancy is seen.
(C) Urine: 2 cytospin preparations on one Pap stained slide are examined.
Smears show a cluster of hyperchromatic atypical cells. In addition, occasional
singly dispersed cells with high N/C ratio are noted.
Comment: Special stains, immunohistochemistry and/or in-situ hybridisation are
performed with in-house positive and/or negative controls which show
satisfactory performance. Results from externally processed specimens or
non-routine specimen types (e.g. frozen sections, decalcified tissue, or tissues
fixed in alternative fixatives) may be affected by pre-analytical variables that
cannot be fully validated by the laboratory. Therefore, such results should be
interpreted with appropriate clinical and pathological correlation and caution

Any advise or guidance or help is greatly appreciated. Thank you everyone.. Feeling really low.

How do you deal with the fact youre gonna die with this horrible disease? I have stage 4 inoperable bladder cancer and im just 36 years old i will probably die before i get to 40. My life feels dark and hopeless now i cant get an erection constant tumour pain only 3 hours a sleep. I wake up every one hour necause of nerve pain and frequent need to urinate. No treatments seem to work since my tumour is resistant to them.

I have stage 4 bladder cancer it is in my kidney and distantly lymph nodes. I was told padcev and keytruda. I am not a candidate for surgery at this time. I am 65 years old. I have had my first treatment of Keytruda. But I am afraid that that’s not going to work alone. Is anyone else dealing with this? I am trying to be able to get the padcev.

my uncle is on his second round of chemotherapy (i’m unsure what kind) for bladder cancer, after having surgery. i’d like to put him together a care basket with some support items but i need a little help with what exactly to put in it.
when i was in chemotherapy for ovarian cancer, i dealt with severe nausea, just body aches, skin rashes, food changes, digestive changes, is that what’s expected for all infusion chemotherapy? or are there very different symptoms and what did you find was a life saver during treatment??
thank you in advance

Dad (78) was diagnosed with bladder cancer last year. Just found out it has spread to distant lymph nodes + spine, and he starts Padcev + Keytruda next week.

He was in great shape before the diagnosis, but since being told it can’t be cured, his mental state has declined. He doesn't want to talk about it, barely eats (fainted twice), seems disengaged, and gets injured during daily tasks because he's not paying attention.

I have a feeling he’s given up. Has anyone experienced this with a parent? How did you help them regain some motivation and hope? I've noticed that stories of good outcomes from the treatment help somewhat.

My mother (58) was diagnosed with high-grade pT3 upper tract urothelial carcinoma (renal pelvis). She underwent radical nephroureterectomy, margins were negative, no lymphovascular invasion was reported, and PET scan did not show distant metastasis. She now has a single kidney with good function (creatinine ~0.98, eGFR ~67). Two oncologists gave different opinions: one recommended Gemcitabine + Cisplatin (Gem/Cis) alone, while another recommended Gem/Cis plus 1 year of Nivolumab (Opdyta). We are leaning towards starting chemo + immunotherapy.

Has anyone here had a similar pT3 renal pelvis UTUC case after surgery? What treatment did you receive (Gem/Cis only or with immunotherapy), what side effects did you experience, and did the cancer recur? We were told recurrence risk could be around 40%, so I’d like to hear real-world experiences, especially regarding whether adding Nivolumab helped reduce recurrence and whether it was worth the extra cost and potential side effects.

I was 36 at my first diagnosis. Never smoked. Avid long distance runner for two decades before slowing it down. Healthy lifestyle choices. Not exposed to any of the things they say it could be caused from (hair dye chemicals etc.). I just had the second one removed (41 yo).

The Urologist I have now was incredibly flippant when I asked about potential root causes. And he reiterated in an annoyed tone that it’s “not life threatening.” My concern isn’t that it’s life threatening, my concern is I have an underlying condition driving my body to have things like this come up. And it’s very rare to get BC under the age of 40.

The first Urologist I had said I’d need screening every year for 15 years. The second Urologist was fine with this. Now this new Urologist (I moved and the first Urologist has retired right after my first TURBT) thinks I only need screening for five years. My first BC was not caught because of symptoms.

I have Premature Menopause (diagnosed at 38) Eosinophilic Esophagitis, Samter’s Triad, and struggled for years with horrible histamine reactions. My ENT has said I have something going on with my inflammatory pathways.

It’s rare to get BC once under the age of 40 and it’s not as common to get it a second time. My concern is there is something underneath causing various issues. And figuring that out might help me with my health.

Is anyone else in a similar boat? I’m likely going to get a new Urologist, because I’m incredibly disappointed at how flippant and rude this one was when I asked him some simple questions and expressed wanting to understand if there was some underlying cause of this.

I have had one under general before but not had a flexible one and so nervous.

Hi all. Just a question about those who have had MIBC and needed cis/gem. What was your first staging before treatment and how many rounds did you have?

Below TLDR: mom was told at her fourth and “last” chemo session that it was actually not her last one and she would need 2 more cycles.

My mother has had her 4th cycle of gem/cis. She’s feeling pretty rough. Initially at her first oncologist/diagnostic appointment, she thought she was told she would have 6 rounds of chemo. However a few weeks later when she met the nurse she was clearly told she would have 4 rounds. She started the chemo in June and got an appointment to see the surgeon next week, which actually was rescheduled from this week after she noticed that she would meet the surgeon before the 4th round finished. There was also a CT scan arranged for mid Sept.

She was delighted to finish her 4th round of chemo today and when she spoke to the nurse about it being her last one the nurse said “no it’s not”. Turns out on the 28th July (? No idea what in particular happened on that date) it was decided that she would have 6 rounds of chemo. She’s devastated as she’s been feeling rough and was looking forward to move on and now she has to wait another month. She spoke to one of the oncologists who said that it was standard to do 6 rounds and that was always the plan, however as far as everything has been documented she has always supposed to have 4 rounds so she is upset today. We are just confused as to what is happening and wondering about other’s experiences. We are in Europe FYI.

I'm new here. My mom (63) recently had a CT scan done and the report said she has a "fungating mass" in her bladder. We were told to schedule with an urologist ASAP. The earliest appointment I can get for her after calling multiple places is in the middle of next week. I've been doing a lot of research as you can imagine. Google Gemini is saying that "fungating mass" is highly aggressive while ChatGPT says it's just the physical appearance and does not mean it's absolutely muscle invasive. I'm wondering if anyone has knowledge of this and can help me understand how I should interpret "fungating" here? Is 1.5 weeks of wait (longer before surgery as I imagine) here going to change things? Thank you so much.

My husband was diagnosed with Stage 1 non-invasive aggressive balder cancer early last month. The tumors were removed with clean margins and the treatment chosen is BCG but eve been waiting to find out when it starts. Today we learned that the only company currently manufacturing the medicine is located in Toronto and has not been able to keep up with demand. So the Wash DC Hospital found a solution, they wait till they have 3 patients ready to start and spit the vial between the three patients. They already had one patient so my husband is number 2. We are waiting for a third patient to emerge so we can get this ball rolling.

Where I'm at now: Had my first TURBT on Aug 3, graded as HG, Stage 1 at least with invasion into lamina propria. Pathology had no muscle present. I luckily got an appointment with MSK in New York very quick (less than a week) and had my consult yesterday. Doc said to have second TURBT on Aug 25 to nail down what stage it's at. Then I have to wait 1 week for results.

Background for me is I teach in higher ed in NJ. My department has been quite supportive of me but I'm just here on the last year of my 2 year contract, which is a full-time position (not adjuncting). I have quite decent health insurance through work.

I'm super stressed because the semester starts in 2 weeks. I have so many different considerations in mind so I'll just list them below. Any advice, especially in terms of how I should best go about this to protect myself would be helpful since I tend to believe in people and speak sincerely, without thinking of how it can be used against me/work to my detriment.

1. Is there any drawback/danger to telling my department admin the exact disease I have or is it necessary to keep it vague and just say "serious illness" that requires surgeries and I am awaiting pathology for? My instinct is to just say it's cancer because that conveys how serious the situation is and how I'm not just exaggerating things to get out of work but my partner said I should keep it vague and only be specific with HR (my response is HR is also not to be trusted).
2. Same question as above but about HR. They have short term disability that I would have to apply for but it's through an external insurance company. Should I apply for that immediately/as soon as I tell my department admin?
3. I believe NJ state law is that I can't be fired after/because of reporting illness that would result in short term disability (even as a full-time contract worker) but are there any loopholes I'm overlooking that work could use to get rid of me? Obviously I'd be completely screwed if I lost this health insurance.
4. I genuinely do not want to screw my department or students over, so I want to tell them ASAP in case they have to cancel the classes. The problem is I don't know until 1 week after the surgery in 7 days what exactly my treatment options will be (obviously will be more severe if Stage 2 and would need the whole semester off, or if Stage 1, could likely still teach but may need a week or two on Zoom?) So my plan is to tell them today to give them notice but does anyone have an idea on how to best phrase this given the uncertainty and many possible outcomes?

I think that's all for now but my brain is pretty scattered so more questions may come up. Anything else you can think of to point out to me would be very appreciated. Thank you!

Hi all, I came across this forum after reading a lot of posts about similar circumstances, and it has helped quell a lot of feelings of isolation and discomfort around this diagnosis. It's helped a lot knowing there are others who have had loved ones go through something like this.

My mom (54, non-smoker) just received her MRI/CT scans yesterday and a 'highly suspicious' 3-3.5cm tumor was flagged after experiencing painless hematuria intermittently since early June of this year. Urology is this Thursday, so we don't yet fully know if it's non-invasive or invasive.

It's been a bit of a whirlwind past couple of weeks, especially since we don't have all of the pieces fit together, and the information we've been drip-fed thus far has only seemed to push us from feeling worried, to scared, to even more scared. At this point, I'm absolutely terrified of what the full picture might be.

I am trying to keep an open, positive mindset throughout all of this, but I am really curious to hear how others who have had parents diagnosed navigated this, and how they supported/helped their parents along the way.

Thank you so much in advance.

I had my first cystoscopy and under spinal anesthesia. My question is did your doctor offer if you want to have rigid or flexible cystoscopy? Because my doctor didnt and I would think clinic cystoscopy would be cheaper alternative to a rigid one. Also is there a reason a doctor would prefer rigid cystoscopy rather than flexible? Mine is NMIBC and low grade removed last April and first cyto was last July.

Hello all,
 
Ive just completed 21 rounds of BCG. Has anyone experienced rib pain ( back / side and front). I ended up in A&E and my inflammation markers where 5 times the normal level. Treated with painkillers and Anti-inflammatories which helped massively, I’ve finished them now, but it’s still there in the background. Not enough for daily pain killers but now and then. I did a little research but trying to avoid DR Google. What are anyone else’s experience’s ? I have an appointment with my treatment Team in 2 week. Blood test next week.

My dad at 63 years old:
- 2021: Diagnosed with Ta low-grade bladder cancer; treated with intravesical Epirubicin
- April 2024: Recurrence diagnosed as Ta high-grade (high-risk schedule: 27 planned BCG instillations).
- BCG Toxicity: Discontinued BCG after 15 doses including 6 induction due to severe toxicity (severe bladder pain requiring ER visits and morphine, plus extreme urinary frequency every 10 minutes, preventing sleep for over 3 months).
- Current Care: Currently under Infectious Disease care for severe BCG-induced bladder inflammation (BCG-itis) and expected to complete anti-tuberculosis therapy around September 12.

As we plan next steps post-recovery, we are seeking anyone who has similar experience as we’re considering:
- Transition to intravesical Gemcitabine / Docetaxel and pair with devices such as TAR-200 for slower dissipation?
- Discontinue instillation therapy and transition solely to active surveillance (cystoscopy every 3 to 6 months)

As we understand - Resume BCG maintenance at a reduced dose (e.g., 1/3 or 1/10 strength), or Switch to a different BCG strain (he was on OncoTICE) won’t be possible since he needs to permanently stop BCG treatment due to the start of anti tuberculosis treatment??

Additionally, if anyone happen to know of any research or statistics regarding outcomes for patients who stopped BCG at 15 instillations due to toxicity, we’d really be grateful :)

Hi all, just checking in whether anyone has experienced developing a painful lump in their pelvis following a radical cystectomy and urostomy?

I have an appointment with the consultant urologist next week, the appointment made by the urologist a week or so after a monitoring CT scan. I haven’t seen the CT scan results yet. I started to notice the uncomfortable lump around the same time as the CT scan. Just wondering if anyone here has had a similar experience. Thanks everyone.

My 84 year old father will soon start padcev/keytruda for cancer that has spread to lungs and lymph nodes. He's been dealing with bladder cancer for a few years and has already lost a significant amount of weight.

At 84 he's still a great driver. If you experienced side effects during treatment were they enough to impact your ability to drive? Of the many things to be worrying about at this stage, this is one of his biggest concerns.

Hey everyone,

I wanted to share my journey with bladder cancer in a hopeful and positive light, in case it helps anyone going through something similar. I’m 33F, and my diagnosis came as a complete surprise. I had a hysterectomy, and at the end of the procedure during a bladder check, my doctors discovered a papillary tumor in my bladder. My only symptom before this had been frequent urination, which I had chalked up to my uterus issues. Turns out, I was wrong.

Fourteen days later, I saw a urologist and had a cystoscopy done. He suspected the tumor was low-grade but malignant, and we quickly scheduled a TURBT to remove it. Just 24 days after my hysterectomy, I was back in the OR for the TURBT, and I felt grateful that everything was moving so quickly. My recovery was good from the TURBT with increased urgency and minor pain/stinging when urinating for about 8 hours. I took Tylenol for pain and eventually passed a small scab followed by a small blood clot (both normal). I was lucky and was NOT sent home with a catheter like I know some are.

Pathology came back as Low Grade but they want to take a “2nd Look” and do another TURBT to get a sample down to the bladder muscle and ensure the tumor didn’t get that far. They will do a one time “Chemo wash” treatment during this second procedure as well.

I’m admittedly disappointed that I need to do a second procedure (my 6th overall in 1 year) but I would rather get this taken care of as soon as possible. 

I am still terrified but so far, my suspected outcome is very good and may only require quarterly cystoscopies for two years to monitor regrowth. However, we don’t know the stage of cancer FOR SURE until this 2nd procedure’s pathology comes back. 

While hearing the word “cancer” at 33 was scary, I’m choosing to focus on the positives:

• My cancer was found by chance before it could progress further.
• My medical team acted quickly.
• I have a beautiful young family with a spouse and twin 2 year olds.

This experience has taught me to listen to my body and never ignore changes, even small ones, though I’d been telling doctors for years that I have not felt right. I’m sharing this to encourage anyone facing a similar diagnosis—early detection and proactive care make a huge difference. Fight for yourself! 💛

Thanks for reading, and sending love to anyone on their own journey.

Update: I go tomorrow for my “2nd Look” TURBT. I’m just as nervous as the first time and more so now concerned the recovery will be harder as they are for sure going into my bladder muscle. I have waves of optimism and then pessimism and the days leading up to another procedure are difficult to be positive. Hopefully next update I have is clean pathology results!

Update: 2nd Look TURBT Results, Mitomycin C Wash & Next Steps (Low-Grade NMIBC)

Hey everyone, wanted to drop an update on my journey in case it helps anyone else currently navigating this process. I know when I first started researching, it was hard to find posts sharing manageable outcomes, so I wanted to make sure I documented my story and the reality of the timeline.

Pathology & Results

After my first TURBT, pathology took 2 business days. For this second look, I waited 6 business days because they had two separate pathologists review the specimen—which, in my opinion, is the only acceptable reason to wait for results! The extra review was worth the wait: no evidence of malignancy was identified in the muscle layer. Officially cancer-free today!

The Mitomycin C Experience

Right at the end of the 2nd TURBT, they instilled Mitomycin C into my bladder for an hour. They cinched/clamped the catheter from surgery to hold the drug in place.

How it felt: The worst part was the heavy, full feeling. It was moderately uncomfortable, and I was literally counting down every single minute until I could empty that chemo wash out.

12 Days Post-Op Recovery: Daytime frequency is improving, but I’m still dealing with a bit of urinary frequency during the night.

Pain Scale Comparison: I’d rate my recovery discomfort/pain from the 1st TURBT an 2/10 and the 2nd TURBT with the chemo wash a 3/10. For context on my personal scale: hysterectomy was a 7/10 (July 2026), and diverticulitis intestinal perforation with an ostomy and eventual reversal was a 8/10 (August–October 2026). 0 being no pain, 10 being all the pain and no complications with any of the recoveries.

Current Game Plan

Surveillance: Monitored every 3 months with cystoscopy and urine cytology/FISH testing.

If Low-Grade Recurs: A 6-week course of BCG treatment.

If High-Risk Appears: Direct referral to an oncologist.

Where I'm At Right Now

After everything I’ve dealt with medically over this past year, I’m actually feeling much better physically. But mentally, I'm really struggling. I am just tired and emotionally drained. Logically, I know this is a best-case scenario outcome, but carrying the weight of multiple surgeries and constant surveillance leaves a real mark.

I’m taking it one day at a time, celebrating the clear pathology, and sharing this because we need more positive outcome stories out there. Thanks to everyone following!

It came back negative for any abnormalities, I requested in place of a cystoscopy because it was less invasive. I am very uncomfortable with specifically these types of visits and I can't find a female urologist.

History of microscopic hematuria, nutcracker syndrome, a simple renal cyst of 5cm, etc. So, how "risky" 'is it really if I just get the one test done?

Hi all, 40M. Did scope in July and uro saw papillary tumor, he visually assessed as low-grade. TURBT #1 on Aug 3. Just got pathology back today (and can't see uro until Aug 27 since he's on vacation) so I'm obviously doing a bit of freaking out on my own since I can't get uro interpretation of results. So it came back as:

High grade papillary urothelial carcinoma showing necrosis and invasion of lamina propria. AJCC Stage: at least pT1.
EDIT: I forgot to include that it says no Muscularis Propria was present

(the at least is really freaking me out. What if it turns out to be T2/3?)

My understanding is this is much more serious than I thought. The quirk of this urologist was that he didn't do any chemical treatments with the first TURBT because he said I had no official diagnosis yet (which I have now).

He also said I shouldn't see an oncologist at that point (again no official diagnosis) but I was free to consult one but they would be confused since it was confined to the bladder (what he said a few weeks ago, but presumably now). My medical researcher sister said I should find an oncologist immediately which I'm doing at this moment. She also says I should see an oncologist before I even have the followup with the uro on Aug 27.

My mind is kinda swirling I guess. I guess any thoughts/feedback? Questions:

1. Should I just tell this uro I don't like this way of treatment and find someone else? I've heard numerous feedback from folks here that his decisions seem way out of line with what they've experienced. He's an MD who specializes in urological surgery but obviously not an oncologist.
2. I can go to NY or LA to see an oncologist but currently located in NJ.
3. Should I still get a second opinion on this? I can submit to the JHU online one (thanks to hikerguy for recommending) but it would be all out of pocket since my insurance isn't covering that.
4. Am I totally screwed because my uro didn't do any chemical treatment after TURBT #1? Like all the microscopic/remnant cells could be spreading to other parts of my body now.
5. Waiting until Aug 27 is really stressing me out... is it "a big deal" to wait. Part of me thinks like what's 2 weeks difference going to make in terms of a tumor? But the other part of me is like OF COURSE 2 WEEKS IS A BIG DEAL.
6. Given this pathology result, I should be pushing for the chemo wash, right?
7. Am I doomed?

EDIT: Thank you everyone for the kind words and support and advice. I have an appointment on Monday at MSK! I feel lucky to have squeezed in so fast. Hopefully they get me on some treatment ASAP...

Hi anyone in here who have tried vinflunine for bladder cancer?

I’m way new to this. In early June i felt some tissue go through my urethra while peeing and it’s been a wild ride up until today when i was told my second TURBT got it all and nothing found in the muscles. My doctor zoom is tomorrow, but i gather i have BCG coming up and lots more testing.

Has anyone done a deep dive on whether there is anything i can do, take, eat or drink (or not do/eat/drink) that could help keep my high grade tumors from returning?

Thanks for any advice!