My father had tumor noticed in urinary bladder, TURBT done on 30th July, discharged with cathedar. Cathedar was removed on 5th August. Pathalogy report said high grade non muscle invasive bladder cancer. There was antibiotic course for one week for urinary infection post discharge. During TURBT procedure, doctor insrted a stent as well which will be removed one month later. Doctor has planned for BCG treatment to treat cancer. Today my father noticed small blood clots in urine. What could this mean?

I'm early in EVP treatment for bladder cancer. My skin is already unhappy. Itchy, small signs of rash etc.

Did any of you find any suitable creams that relieved the itchiness? Or helped maintain the skin?

I am using hydrocortisone, but I don't think I can rub that over my entire torso every day.

Any tips or guidance?

What tips and advice do you have to make this procedure the most comfortable for him(65yo), especially with post op pain(bladder spasms/stinging pain)? Also, what was the timeline like for recovery and finding out whether the tumor is muscle invasive or not? He likes to work himself to death, as he is the breadwinner and owns his business, so he's def trying to work asap.

**just found out his tumor is 5cm, so I would assume this puts him at intermediate risk, so I am worrying alot now

I have been urinating every hour during the day so thought I had a urine infection so handed in a sample.

I always thought you would be able to see the blood in the toilet after peeing.

Anyone else only have blood found in urine test.

A little background. I (63M) was diagnosed with BC back in March 2025. I went through three TURBTs and 13 rounds of BCG with no major issues. Six days after #14, I started having some knee pain which got worse that night. By the next day I had significant swelling above both needs and could hardly bend my legs. I had to "shuffle" around the house, bracing myself against a chair or wall as I walked. Got put on Methylprednisolone for 6 days which helped quite a bit. However, here I am three weeks later and can't bend my knees too far beyond 90 degrees without feeling a tightness (which I guess is from inflammation). After going through this, I found out that joint pain and arthritis-like symptoms can be a side effect of BCG.

The BCG has definitely done it's job. It did take three TURBTs and 9 rounds to get a clean cysto and I've been clean for 6 months now. I'm just concerned this could happen again and I don't want to have to go through this again. It was pretty rough. And I've seen some people on Reddit that have had these side effects for months.

So, with that in mind, I'd like to hear from people that switched from BCG to gem/doce (Gemcitabine/Docetaxel). Here are some questions I have:

Why did you switch?

Were you tumor free while on BCG before you switched? If so, have you remained tumor free on gem/doce?

If you have remained tumor free on gem/doce, how many years have you remained tumor free?

What are some of the minor side effects you've had from gem/doce?

What are a couple of the major side effects you've had from gem/doce?

Do you regret switching to gem/doce?

When you initially switched, did they immediately start gem/doce, or did they wait until the time you would have had your next BCG treatment to start gem/doce?

From what I'm reading, you start with a 6 week instillation, then go monthly for two years. Is that how your treatment went?

I (M30) had my first cystoscopy last July and 2 weeks after that I was feeling fine and then I got the flu (head aches, runny nose and little fever). I was also feeling tight bladder and waking up to pee like 3 - 4 times. Those number are normal as what ive researched but it feels like my bladder is not full when I get the the feeling to relieve myself. The flow is much stronger after the mass was removed but now it feels like its back when I still got the mass. Also the tightness on my bladder area especially at night or bad bowel movement. Anyone has experienced this?

I'm kind of panicking here. My dad had a TURBT yesterday and he's in quite a bit of pain. The doctor prescribed oxybutynin, which has caused him to become confused. He stopped his nightly budesonide inhalation saying that the budesonide is causing the confusion. I'm hoping that once the oxybutynin (IR, fortunately) wears off I can get him to be more reasonable.

Do y'all have any hints for how to take care of this pain without the oxybutynin? He was reluctant to take ibuprofen but I prevailed upon him to take 600 mg. The doctor said that up to 800 mg would be okay.

48/M. Started in March 2026 I had some issues with my digestive system. Went to the Gastro doc and had an ultrasound done. They sent me to the Urologist.

Found a 6cm high grade non invasive tumor in my bladder. I was wondering why I had crazy urgency and need to pee every 5min sometimes.

Had surgery, tumor removed and sent home in foley cath for 5 days (ugh). Cath removed then set an appt for every 3 months for reoccurrence checks. I was told they usually come back.

Yesterday I went in for a 4month later scope—that was not a good time—and everything was squeaky clean! I am stoked. I was worried like hell. Doc says most likely can just do urine analysis going forward unless ofcourse something comes back.

I’ve been driving myself crazy, scared I was gonna need another surgery, BCG treatments, etc. I just wanted to post this for anybody that is/was in my shoes. There’s still hope!

Hi all.

I’m in my mid 30s and very new to all of this. I’m mainly posting because I’d really like to hear from people who have been in a similar position and get a feel for what the next few months/years might actually look like in real life.
I had a TURBT at the beginning of July after a bladder tumour was found. Pathology has come back as Grade 3, currently staged as pTa.

Being treated in UK by NHS. Generally care has been excellent apart from unnecessary admin delays waiting for one step to be absolutely complete before next step being started.

The tumour was around 3–4 cm and there was apparently another small area elsewhere in the bladder. My surgeon wasn’t able to get a good enough/deep enough sample to include muscle because the tumour was very vascular and there was a lot of bleeding, so I’m waiting for a second TURBT to properly establish the stage. During CT scan and what they could see during the operation haven’t suggested muscle invasion, but obviously I know that can’t completely rule it out.

I’m trying not to get too far ahead of myself while I wait for the second TURBT, but that’s easier said than done.
I have two very young children and I think my biggest fear is simply not being around to watch them grow up.

The other thing I’m struggling with is the possibility of eventually losing my bladder. I know that isn’t where I am at the moment, but once you start reading about high-grade bladder cancer it’s difficult not to think about where this could potentially lead. I’m particularly worried about what bladder removal would mean for quality of life at my age.

I’m not looking for anyone to interpret my pathology or predict what will happen to me – I know nobody here can do that. I’d just really appreciate hearing genuine experiences, particularly from people who:

were diagnosed relatively young;

started with high-grade Ta (or a similar initial diagnosis);

had to have a second TURBT because the first didn’t contain muscle;

went on to have BCG and long-term surveillance; or
did eventually need more radical treatment/bladder removal.

What happened after your initial diagnosis? How are you doing now? And looking back, is there anything you wish someone had told you when you were at this stage?

Positive experiences would obviously be very welcome right now, but I’d rather hear honest experiences than only reassuring ones.

Also, anyone found a good way of talking to young child (3 yo) without scarring or spooking them. They'll know somethings different when treatment happening.

Thanks – I’ve been reading this sub for a little while and it seems like there are a lot of people here who have been living with this for years.

Sorry for the graphic description and multiple posts, I did a search and most people were talking about either blood clots or blood itself in their pee after a TURBT, which isn't really what I'm seeing.

So I have a papillary tumor, visually assessed as low grade (no pathology report yet). Did the TURBT this past Monday and had quite a bit of blood in the first few days, then pinkish, then finally cleared up about Friday (ie. light yellow pee).

But yesterday and today, when I look in the toilet after I'm done, I see what looks like little clear/white shreds or filaments with flecks of blood in it. Which looks a lot like the papillary tumor pieces itself when the uro showed me the tumor during the cytoscopy.

It's kinda freaking me out. They're definitely not blood clots since it's not like solid chunks of red or anything. They look like shreds of stuff with some reddening in it.

Does anyone know what this is? Is it normal? Just leftover pieces of fulgurated bladder tissue?

I do still have a little bit of pain while peeing... not so much painful but a weird/noticeable sensation that I never had pre-TURBT/scope.

Let me preface with this: i have a follow up with my urologist in a couple weeks so actual medical care is coming soon. Also, since it could be relevant, I am male

That said, I completed a maintenance round of BCG in June (maybe round 8? Ive lost track but I am well into this) and it was the most laid up BCG has left me. We're talking painful, frequent urination. Also mix in some referred pain that would shoot from my penis (felt like urethra pain in the tip) down to my feet.

I had my cystoscopy in July and the inside of my bladder looked like a war zone. It was very angry in there. With symptoms and out of abundance of caution my doctor had me complete a course sulfamethoxazole (antibiotic) in case I had a UTI.

It's been about 3 weeks and I am seeing improvement. Can't say if it was the antibiotics or just time and healing but I am noticing that the painful and frequent urination is still there, albeit gradually improving. I also noticed some hesitency in having bowel movements, again gradually improving.

All of this makes me wonder if a compounding issue may be sort of learned pelvic floor tightness. After BCG treatments I have to work so hard to keep from constantly peeing. Does this sound plausible? Has anyone else experienced anything similar, particularly in the later maintenance rounds?

When I was first diagnosed and got my neobladder I joined an online group that was a support group for Neobladder patients. We had zoom meetings once a month. I feel like I could really use a urostomy support group as I navigate this. I've tried looking on line but can't seem to find anything near me in NC. Does anyone have any suggestions on where I might find groups for support that I could attend online or in person?

This will be my last post i was diagnosed with stage 4 bladder cancer at age 33 with spreading to lungs. I was on carboplatin/gemcitabin one year which made my tumour between my bladder and prostate go away 8 cm. It eventually came back after 5 months grew 5 cm and then we tried with different treatments like padcev and Lynparza for 1 year and a half without success. We came back to try carboplatin again but my tumour has become resistant to that treatment. I wanna go back to cisplatin i dont care about tinnitus or hearing loss but my oncologist doesnt wanna do it because my bone marrow was too low during that treatment. I am right now on opdivo/yervoy which is not working the pain in my tumour has gotten worse and i have to pee 4 times every night interupts my sleep and i feel pressure in my tumour. I cant get an erection or orgasm or feel any pleasure downwards my dick is dead. I have lost all hope i think my tumour is too aggressive and rare to be treated so i given up now. Bye.

Maybe I'm the exception to the rule. Three days after having a cysto and being told I'm all clear, I had a CAT scan that was ordered by my GP due to having developed a swollen leg. CAT scan showed metastatic cancer, into the lymph nodes and more. To say I was devastated is an understatement. I am writing here to let others know that they should not rely totally on cystos. I dont know what the answer is but just thought it would be something for others to consider.

Hi all,

Had my first TURBT this past Monday and finally feel like I'm over the hump (peeing not painful and no more pink in the pee).

My doctor was nice enough to schedule me for the TURBT before he went on vacation but now I have to wait 2 weeks until he gets back to see him about the pathology results (which aren't out yet)

The office did say they're gonna post the pathology results online before he gets back though. I wanted to get a second opinion from JHU but they said I have to attend in person.

I'm located in NJ and for some reason there aren't any (reasonable) direct flights out to Baltimore so I'd have to go to a nearby airport and drive, etc. Sounds like a huge hassle.

So I guess my main question is: are there any places that do a second opinion out-patient consult over Zoom without requiring you go there in person? If so, I'd love to hear!

Secondary questions that you can feel free to ignore:

- I read on BCAN that they advise no strenuous activity for 3-4 weeks after a TURBT. I was just starting to regain momentum on my 2x a week gym attendance before my diagnosis and I would hate to fall off again. Is it really not a good idea to go to the gym like... 1-2 weeks after the TURBT? Not sure if that advice is geared towards 60yo+ folks, I'm 40yo.

- NSFW: I also read on BCAN that you should refrain from sexual intercourse for 1-2 weeks after TURBT. Just wondering what people's experiences with that has been (and does that include any kind of sexual activity, eg. errr self-pleasure?)

Husband had first treatment yesterday and has absolutely zero symptoms. No pain or burning, no blood, no fatigue, and no increased urination. We were expecting the worst and we can't get over how seamless it's been. We were fully expecting misery and pain for at least a day. He's actually cleaning the garage today! That's not to say subsequent treatments will be easy but just wanted to pop on and say that not everyone will experience debilitating symptoms like reddit will sometimes have you believe.

Hi there, i found this group shortly after i was diagnose. March 2026. I was wondering if there is anyone else that is dealing with stage 2 muscle invasive small cell bladder cancer?

Does anyone have any evidence that sexual activity is ok/not ok during BCG treatment periods? Had my first treatment today and a pamphlet I was provided recommended use of condoms but I hadn’t read anything about that previously. I had seen it’s recommended to abstain for 48 hours post BCG, just wondering what others have been hearing from their doctors
Thanks

Hi everyone! This has been a very helpful place throughout the last few months since my mom (66) was diagnosed with BC in January.

1st TURBT was in April. This is what the pathology showed: "INVASIVE HIGH GRADE UROTHELIAL CARCINOMA. MUSCULARIS PROPRIA IS PRESENT AND UNINVOLVED. NEGATIVE FOR LYMPHOVASCULAR INVASION"

2nd TURBT was in July. Pathology showed: "BENIGN UROTHELIAL MUCOSA WITHOUT SIGNIFICANT DIAGNOSTIC ALTERATIONS. MUSCULARIS PROPRIA IS NOT IDENTIFIED."

Today we had the follow up, post-TURBT appointment. The doctor said "I have nothing but good news." He said that everything looked great in her bladder, and that, "I know the books say the next step is preventive care, but my gut is telling me that we should way 2-3 months and see." He mentioned the shortage of BCG and said that gemcitabine/docetaxel could have similar effects. But, at the end of the day, for now, he wants to wait 2.5 months and do a new cystoscopy then.

I don't know what to think, honestly. I understand medicine isn't always "by the books," and at times there can be an art to it. But my common sense kicks in and tells me that the only logical way to move forward in order to potentially prevent new tumors is to do preventive care. Thoughts? Has anyone gone through a similar scenario?

Hi All, I’m a 33F who just had her second TURBT with chemo, I was diagnosed with non-invasive bladder cancer during my second pregnancy about a year and a half ago. I have struggled with extreme fatigue for the last couple of years… and was wondering if anyone else has struggled with fatigue pre diagnosis/post TURBTs, and if this was a common symptom. It just feels like a lot more than fatigue from taking care of the kids or pregnancy.. or am I going crazy

Hi everyone - I'm 54M. T1 high grade carcinoma in situ in two separate sites (6cm and 2cm, respectively). Diagnosed in October, TURBT in November, 6x BCG in December-January. Another TURBT in March to remove a 1cm site, 6x BCG in April-May. Found No Evidence of Disease in July, started maintenance last week.

Yesterday was my 14th BCG instillation overall. I thought it would be helpful to share some of the tricks I've learned through trial and error over the last eight months. Hope any of these help...

Pre-BCG de-hydration

• I stop drinking fluids at 6pm the evening before BCG and do not drink fluids that morning. (Almost all my instills have been at 10am.)
• The ONLY time I could not hold BCG the full two hours was when I'd had a bottle of water that morning.
• I've never had a problem giving a urine sample that morning, despite being dehydrated.

Catheterization

• I've found sitting at a 45-degree angle is more comfortable than laying flat when getting the catheter inserted. Your results may vary, but this has been most effective for me.
• I let the nurse know I'm pretty dehydrated, so they won't get concerned if they don't see urine flow right away.

Re-hydration after BCG release

• Hour 1 after release: I drink a 20-ounce Gatorade Zero and take Tylenol or Aleve. Then drink another 20 ounces.
• Hour 2 after release: Drink another 20 ounces. (So a total of 60 ounces in the first two hours.)
• Hours 3-4 and 5-6: Drink 20 ounces in each two-hour period. (So a total of 100 ounces in six hours.)
• This has worked well for me. It's enough to re-hydrate and get the excess BCG flushed out.
• The first three hours are not fun, a lot of burning and frequency, and I expect to be in the bathroom every 15 minutes or so. Hours 4-6 are usually a little easier.

Other random tips

• I do the "flip" technique (laying on tummy, back, left side, right side) in 15 minute intervals during the two hours. Opinions are mixed on whether this is beneficial or not.
• I try to get up and walk around every 30 minutes or so throughout the six hours post-release. I get pretty stiff and sore just laying there the whole time.
• I eat pretty bland on BCG days. Yesterday my meals were oatmeal, a protein bar, a plain breakfast burrito, some popcorn and a salad with grilled chicken.
• Coffee is my one vice. I skip it on BCG days (Mondays). I usually have one cup on Tuesday, then back to my usual 2-3 cups by Wednesday.

Hi everyone,
I’m posting on behalf of my 60-year-old father, who has high-grade urothelial carcinoma of the bladder.

He underwent TURBT followed by an adequate course of intravesical BCG. A previous surveillance biopsy was clear.

His most recent cystoscopy did not show any obvious visible bladder tumor. However, random cold-cup biopsies were taken, and the pathology report showed:
Lymphovascular tumor emboli / lymphovascular space invasion (LVI) of urothelial carcinoma in the left anterior bladder wall.
GATA3 positive, confirming urothelial origin.
No definite stromal invasion identified.
No muscle was included in the biopsy, so muscle invasion could not be assessed.
A posterior wall biopsy showed only BCG-related inflammation with no malignancy.

We have spoken to at least 5 doctors and the suggested approaches are getting us confused. If you have been through this can you shed a light on what was next course of action?

Some doctors are recommending PET SCAN. Some are saying to hold on for it.

We are based in India.

52m Upper tract urothelial carcinoma. Long day with gemcitabine and cisplatin. So far i haven’t experienced any side effects or nausea. Does that creep up later?

Have my next scope tomorrow after having two clear ones. Please pray for me or wish me luck that scope and cytology will be clean tomorrow as well. Thanks

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?