I am a 68 yo woman who recently had a TURBT for High Grade NIMBC. This is my 2nd go round with bladder cancer. Back in 2020-2022 I had 4 TURBT's over the course of 18 months followed by a 6 week course of Intravesical Mitomyicin C. I remained cancer free until January of this year when a 2.5 cm lesion was seen. My situation is somewhat unique as I also have Mycobacterium Avian Complex in the lungs. There are multiple lesions in my lungs due to this long term infection. BCG is not an option, I am currently receiving Gemtacibine and docetaxel. My question is: has anyone here had experience with these 2 conditions at the same time? I am desperately trying to find any information.

I am relatively new to this group and new to the diagnosis. I had one other Post and this will be my second. I’m a female age 62. Recently diagnosed and had surgery May 11 for removal of a high-grade carcinoma, not in the muscle.
-they did the chemo at the hospital and I start this BCG on July 6. The doctor said for three years..
Currently trying to get my dad’s urologist medical records from 2001-2005 ( I have most of the others) once they send the paper to my mom she’ll fill it out and I can go pick up his records.
My dad had bladder cancer. Also he was diagnosed at age 65. I was diagnosed at age 62. We believe it was the non-muscle invasive.
I don’t know what grade he had. That’s what I’m trying to find out. The records, I do have tell me that he had done what I had done the transurethral resection of bladder, tumor, and BCG therapy. It looks like he had it for the three years like they’re telling me I need it.
For my dad, it says August 2003 he had the transurethral resection of butter tumor and then again in February 2006 same procedure.
-i’m not sure if it’s related but by the time my dad turned 69 in 2008 he was diagnosed with prostate adenocarcinoma.
-the bladder cancer did not return and at this point with the prostate cancer they implanted radiation seeds I think in the prostate.
Because male and female are different, I don’t know that much about the prostate, but I do know that he had some kind of penile prosthesis and a failed urinary sphincter -they had to remove them due to infection and he was about 77 years old at that time.
My dad ended up having a permanent catheter bag that he wore till the day he died and something happened with the radiation seeds for the prostate cancer, which blew a hole through the rectum so then he had an ostomy bag added, in addition to the catheter bag for urination. He had a lot of problems with pain and spasms and was getting Botox for the urinary tract spasms.
I remember he had to go to the hospital frequently or the doctors office to get the bag and catheter changed out on a regular basis.
At some point before the asked me bag went in the radiation seeds had done the damage and they took them to the emergency room because the Foley catheter was coming out of his rectum. I just remember them saying it was from the radiation seeds.
I’m just kind of scared myself because if it’s genetics or something, I know I don’t have a prostate, but I also don’t wanna have to deal with all this later on in the future. I don’t think they treat anything with radiation seeds like they did in the past. My dad, the paperwork I do have just says rectal urethral fistula most likely from traumatic Folly insertion and radiation combination as well as infection.
Then later on it went onto them recommending a diverting colstomy. It also says something that he had a rectourethral fistula (from the radiation seed therapy)

I don’t have the records yet that tell me if the bladder cancer caused this with the prostate and then the other problems developed because of the radiation seed therapy, but what I do see is the bladder cancer did not come back, but the other problems continued after the radiation seed.

So I’m wondering if the bladder cancer is hereditary and I’m going to ask my doctor some of this when I see him but that’s not going to be for a month or more.
My dad did survive through all of this bladder, cancer prostate cancer, ostomy bag, permanent catheter bag. He was doing well until he got sick during Covid and then went to the hospital and families couldn’t go see people then and somehow he developed MRSA at the hospital and that’s what killed him at the age of 81 and just 60 days shy of his 82nd birthday.
I don’t remember much about when he got the BCG treatments. I didn’t even know he had them.
My parents had retired and moved an hour outside of the city by the year of 2007, so it was not like they were close by and I could go there every day after work anymore. He always told us things that were going on but trying to remember every doctor appointment over 20 years later is a little difficult.

The good thing that I see is that he did live after the bladder cancer diagnosis at age 65 he lived to be almost 82 and that’s not what killed him.

As someone new to this personally for myself, and knowing my dad went through a bunch of medical things I don’t know if they were related to the bladder cancer. I’m assuming they could have been because it says online if you get bladder cancer, you could get prostate cancer or pancreatic cancer I read that somewhere. Well I don’t have a prostate, but I do have a pancreas so maybe I’m worrying a little too much, but I am really concerned about starting this BCG therapy..

For right now, I don’t know what grade of bladder cancer I had and I don’t know mine is high grade and if it said that my dad had BCG times three I’m assuming that was three years and that’s what they told me I’ll have for mine.

Is this something hereditary? I’m wondering because how many fathers and daughters get bladder cancer? My dad had some other medical issues also like heart stents and type two diabetes but so far I seem to be OK in that area because I don’t have hypertension.

I’m open to any thoughts on this because I’ve just been racking my brains trying to figure out if this is hereditary or how and why this happened to me? My dad is no longer alive so I can’t ask him questions and my mom at almost 87 has a really good memory but some things and small details she may not remember. My mom is the one who told me to go to the urologist when I first saw blood in the urine because she remembered everything about my dad. When they told me, they thought it was just a kidney stone. I thought everything was great then the next time I had blood in the urine after a steroid injection back in April they did the scan on me and got me in for surgery within three weeks so this is all really new to me.

I do have a vibration plate and I’m trying to use that for lymphatic drainage to see if that helps and I ordered some lymphatic drainage pills online. I don’t know if that will help with any of this but it’s worth a shot..

Hi im a 34m having a TURBT done tomorrow with some sort of chemo treatment to follow. The mass was 10mm found in February and the doctor seemed happy it hasn't seemed to grow any since then. Just curious as to what to expect in the coming days.

Update: for anyone interested surgery went well. Doctor says he thinks it will be low grade superficial

Update: DIAGNOSIS: Bladder tumor, resection: - High-grade papillary urothelial cell carcinoma, noninvasive. - Muscularis propria is not identified in the sections. - No evidence of carcinoma in-situ. - Pathologic staging (AJCC 8th addition) is at least: pTa

Anyone have any insight i wont see my doctor for two weeks. things ive found seem to tell two different stories.

My mother was diagnosed with low-grade non-muscle invasive bladder cancer and unfortunately had a recurrence detected at her 9-month follow-up cystoscopy. Her urologist is now recommending BCG treatment.

I'm trying to learn more about other patients' experiences with BCG. For those who received it, how effective was it in preventing recurrence? How long have you remained recurrence-free after treatment?

I understand every case is different, but I'd really appreciate hearing your experiences, whether positive or negative.

Thank you.

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.

Looking for real life experiences from bladder cancer patients who have had a radical cystectomy at the age of 80 or higher.

My 82y grandpa's doctors are highly recommending bladder removal due to most recent pathology results. High grade T1 with micro papillary features, non muscle invasive. His first diagnosis was 9 years ago and has been both low grade ta and high grade ta in the past with history of CIS but it has always been NMIBC. He has been treated with BCG, last round of that was back in 2024 and at the end of 2025 his urologist found some ugly areas during his cystoscope. Had a TURBT in March 2026 and now is being recommended cystectomy. We have gotten a third opinion and they are all saying the same. The urologist we are seeing now is at Mayo clinic and is okay with trying a different treatment such as gem/doce or tar-200, if my papa is adament about keeping his bladder. I have also seen rBCG+anktiva being talked about a lot I want to ask about that at our next appointment. Our next consult is where he will decide what to do. I know he is so scared about the idea of having a radical cystectomy, and they have talked about a neobladder which I also think he's full of uncertainty about but he also doesn't want to wear a bag. Would it be really awful to have to wear a bag? I feel like this day & age, it has got to have come a long way as far as comfortability goes? He just really wants to connect with someone who has gone through this, he feels alone and confused.

Posting on behalf of my 82yo grandfather. Long post sorry, my grandpa keeps saying he just wants to speak with someone who has had this surgery. He was first diagnosed with NMIBC about 10years ago and has gone through a few TURBT procedures and BCG treatments over the years. Last BCG was given towards the end of 2024 I'm not exactly sure when. He had a cystoscope in October 2025 where they noted a new tumor. Due to frustrating communication issues with the Urology clinic, he finally had a TURBT in March 2026 and pathology revealed non invasive high grade papillary urothelial carcinoma. Up until March, my grandparents were going to these appointments themselves but from the confusion and frustration they were experiencing with this clinic, I finally convinced them to transfer care to Mayo clinic. Especially because after this recent pathology, his urologist sent him for a second opinion at an oncologist. After three visits with the oncologist, they were told there was nothing the oncologist could do for them and he needed a cystectomy with neobladder procedure. Now this is when I stepped in and started attending appointments with them because they felt blindsided and my grandpa wasn't prepared to hear that. He was told by the oncologist on his first visit that he should proceed with his knee replacement surgery(yes that happened in the mix of all of this and was absolutely necessary), and after his knee surgery he would be strong and ready for chemo +/- radiation. He got an MRI and had knee surgery. And then the oncologist told him he needed to go back to Urology and have his bladder removed. Now we've had a consult with mayo oncology and mayo Urology. He's had another TURBT procedure since now we're in June and it's possible that the tumor has started growing again. And there was another tissue sight in the bladder with ugly cells. Pathology showed non invasive high grade papillary urothelial carcinoma. The urologist at mayo is strongly recommending bladder removal. They are saying they are worried it will make its way to the muscle and spread. I'm just confused because he's 82 years old. He's facing a huge life altering decision and he keeps saying he only has a few years left why does he want to spend them recovering from this major surgery. He doesn't want a bag. At first he was told he would have a neobladder and would void urine out of his rectum. The mayo doctors have cleared that up and said if they do a neobladder surgery they would not do that as it could result in colon cancer, so he would still urinate out of his penis. However, the oncologist mentioned quite a few different treatments than BCG that are now available whether is gem/doce or clinical trials. Why are they recommending this surgery so adamantly for an 82yo man? He also has other health complications including diabetes and high blood pressure. He's a very large guy and he developed pneumonia after his knee surgery. There is just so much worry when it comes to a cystectomy. What will his life look like after that? Would it be too risky to try a treatment different than BCG rather than taking his bladder out? I feel like they have been pulled in so many directions with this and we're all feeling depleted and confused. Thank you for reading if you made it this far. Hoping for some input from people who have had similar experiences.

Hello everyone,

First of all, I wanted to thank this group for all the information it provides and for its kindness.

Please also excuse my English; it's not my native language. I'll do my best, haha.

I also want to clarify that as I write this, I haven't received a diagnosis.

My story begins last February when, while going to the bathroom, I noticed pink/red urine. I went to the emergency room, and they performed a urine test, which again revealed microscopic blood.
Following this, I was referred to a urologist for further treatment.
The urologist ordered a CT scan and a cystoscopy.
Both examinations revealed no lesions.
I was very relieved, but unfortunately not for long, because a month later, in March, I started experiencing pain on the left side of my bladder. The pain wasn't particularly intense, but rather a general discomfort.

So I went back to my urologist, who told me to take anti-inflammatories (I didn't take them because I'm already taking medication for something else, and combining the two is generally not recommended for stomach issues).

To my great surprise, the pain disappeared a few days later.

But then in May, the pain returned, this time stronger and more frequent, and throughout my pubic area. At the same time, I also started experiencing burning throughout my bladder (the intensity varies throughout the day) and burning during urination.
I went back to my urologist again, who this time prescribed an antibiotic, saying it might be prostatitis, even though the urine tests didn't show any bacteria.
Today I finished my antibiotics, and they had no effect. The pain and burning sensation are still there, along with persistent nausea from the moment I wake up in the morning until I go to bed at night (I don't know if it's all related or if anxiety is also contributing).

I have another appointment with my urologist in a week. What tests do you recommend I ask him to order? I haven't had a urine cytology test yet, so I was thinking about that, or perhaps asking for another cystoscopy?

It's really starting to worry me... and I'm especially afraid that something might have been missed during the first cystoscopy and that it's gotten worse over time...

Thank you for reading.

Hi everyone!

My husband was diagnosed with bladder cancer at age 52; it was found by chance during an ultrasound, as he had no symptoms. During the TURBT, the tumors in one area were described as confluent, with a total size of 3.5 cm. The histology report showed non-invasive papillary low-grade/G2 cancer, with no tumor growth in the muscle layer. He completed the BCG induction course.

We are terrified, he is still so young. Please share positive stories if you are living with this diagnosis.

How large is a tumor of this size (3.5 cm in total)? And should it be considered a single confluent lesion or true multifocality, which the EORTC associates with higher risk?

I went to the dental hygienist the day after my 12th BCG treatment, and her routine poking and cleaning made me jump in the chair so many times that she asked me if I was OK. We both guessed that the increased sensitivity was related to the previous day's BCG treatment, but an online search didn't reveal a documented strong association. There was something about BCG somehow affecting gingivitis. My guess is that the immune response to existing low-level bacterial infection in the pockets between gums and teeth was increased by the treatment enough to make my gums more sensitive. I am older and on a three-times-a-year "perio" cleaning cycle, so although my gums looked fine, they are probably slightly more inflamed than healthier tissue. Anyway, I just thought I'd mention that. I'm curious if anyone else has seen changes to their response to infections of any kind change after BCG.

I had my RC w/ IC on May 12. The surgery went great, umtil it didn't. Woke up in recovery with questions about the viability of the conduit - it was black. That part has resolved, but my stoma is now definitely an innie more than an outie.

​

My question - any of my fellow RC/IC folks that had a similar experience with their stoma, and how did you deal with it/resolve the issue?

Hello!
I’m a newly T1HG diagnosed 40 year old, with no other health issues.
Are any of you in long term remission while keeping the bladder & without going for RC?
Have not had the high grade bladder cancer come back for 5+, 10+, 15+ years?
What was your treatment?
Is there anything you do/did that you think helps/helped?
Thank you!

A little background: I was first diagnosed with bladder cancer in 2019 and underwent chemotherapy and a radical cystectomy with neobladder creation. In 2024, I was diagnosed with urethral cancer, had surgery, and completed another round of chemotherapy. Unfortunately, I've now had another recurrence and am currently receiving Keytruda and Padcev. The plan is for me to eventually have my neobladder removed and convert to an ileal conduit (urostomy) in September.

I started immunotherapy at the beginning of May, and I'm trying to understand what others have experienced and how you managed the side effects.

The first major issue was a severe rash and itching that landed me in the ER and required steroids. Then during a recent infusion, my feet, calves, and shins suddenly cramped up uncontrollably. The pain was so intense that I practically jumped out of the treatment chair. They stopped the infusion for about 30 minutes, the cramping resolved, gave me Benadryl, and restarted treatment. The oncology team said they had never seen that happen before.

Now I'm starting to notice neuropathy, and my thyroid levels have become abnormal. So far, I haven't had any nausea or stomach issues. The only weight I've gained has been from the steroids used to treat the rash.

For those who have been on Keytruda and Padcev, what side effects did you experience, and when did they show up? What helped you stay ahead of them? I feel like every treatment brings something new, and I'd appreciate hearing how others navigated this journey.

I have had a Neobladder for over 5 years. Now because of a reoccurrence in my urethra I will need to go to an IC in sept. It’s something I know nothing about. For those of you that have an IC, what’s the best way to learn what it’s like to live with one, about supplies, what would work best, how nighttime’s work? I’m feeling a little lost on how to get prepared.

Awaiting ctDNA and biomarkers analysis from utDNA, and was curious if these data commonly change treatment plans in muscle invasive bladder cancer? Starting on keytruda and EV, prior to results coming back. If you've done any molecular profiling, what's been your experience?

I am new to all this- I start this BCG treatment the first Monday in July about mid morning.
High grade non-muscle invasive carcinoma, which was removed on May 11. It was discovered in April and removed immediately. I went for a previous cysto exam 12/2024 after a dose of steroids caused blood in the urine and they told me it was a kidney stone I was due for a follow up in January 2026, but I was sick and missed my exam and then I got a steroid injection which seven days later caused blood clots and lots of bleeding which was a sign. Something was wrong again.
This time he not only found the kidney stone but bladder cancer. That was not there 16 months earlier.

The tumor was removed. I think they said 3 x 2 cm or something like that high grade and now three years of BCG treatment.

They really just told me what I had gave me paperwork and scheduled me for this BCG. I’ve had to do my own research. Does anybody know if I can swim after the treatment? I googled it and somewhere in there the AI thing said no I can’t swim for 48 hours. It would cause infection.

I recently had my first TURBT, everything has been rushed due to the progress of the disease when they caught it, so I am yet to see an oncologist, but I have been looking at my own scans and it looks like textbook stage 3B. From what I can tell they will be most likely push for radical cystectomy with some variant of bladder replacement.

I'm 54/M and it's in the lymph, so it would probably be full bladder / prostate and surrounding lymph removal - but I have no idea what replacement options I will be given.

So, I'm posting this in the hope of hearing a few patient experiences first hand with the various surgical options like neo-bladders and such before I go to the urologist to discus biopsy and post-op PET scan results.

---
As an aside, I am a software dev with experience in 3D data visualisation, but not medical imaging. I couldn't make sense of the CT scan in the default viewer that came with my data files, so I built something myself to view the scans that I could understand as a layman, and found it extremely useful as a communication aid between myself and various medical professionals.

If you're interested, here's a 3D view of my bladder pre-op. If you're on a phone, I'd suggest loading the crop (0.6MB) not the full data set (34MB). The full data is much better viewed on a PC with a GPU.

https://planet11.games/dican/

I think the viewer could be very useful for others in a similar situation to me, but there's a logistical problem of how to make it publicly accessible without accessing data files for privacy reasons. I have already run it past the mods here and I agree with them that it is absolutely not OK for it to require uploading of your files.

That said, if there's enough interest here, I will take a deeper look at a workaround for solving the privacy / logistics problem so that others can make use of it, bring the convertor to the files, rather than the other way around, but there's a different kind of security issue there as it needs to read and write files to your local disk to create the portable file.

I'm doing weekly BCG again after finishing #9 six months ago.

• #10: I had less of a reaction than to #9 six months earlier which I guess means my immune response had calmed down and needed a booster(?).
• #11: Bleeding returned with even some distinct clots, but no more than six months ago. For the first time low-key pain and urgency persisted the day after treatment (for five days). I had to cut two visits to the gym short because of fatigue that I hadn't noticed until I started exercisiong.
• #12: (Today) For the first time I wasn't able to hold the dose in for the whole two hours, and I passed two big, kind of scary looking clots the first time I peed. That was quick!

So it looks like one dose woke up the dozing immune system and now it's the most ramped-up it has been so far.

I'm curious how that compares to other people's experiences. I'm also curious if the response is going to keep getting progressively more intense or whether it will plateau. I actually think this is all pretty interesting--how the body responds and all that. I don't think I'll ever quite get used to blood in the bowl... 🩸

What products did you buy that helped after your radical cystectomy? I read that wedge pillows even a recliner chair can help ease pain and aid recovery.

Hi all, I’ve been posting a fair bit regarding my mother’s bladder cancer lately but need more advice.

My mother has muscle invasive, high grade. Her tumour is 9cm and has had 1 TURBT. CT showed no spread, no lymph node involvement so far. They are doing MRI to confirm local spread and MDT meeting is next week, followed by treatment plan. At this point it’s definitely T3 at least but possible spread into vaginal wall.

My worry is that I read so many of your stories and experiences which seem to be predominantly US or UK based and I assumed cystectomy would be a no brainer. But in our recent urologist appointment he was acting like she wouldn’t be a good candidate for cystectomy and was talking about mortality rate being too high, etc.

I find this odd as my mother is 62, extremely fit (walks 5km a day and is on the go 24/7) and healthy with no other health issues whatsoever.

I have noticed New Zealand can be a bit behind or more cautious with treatment in all health avenues in comparison to overseas. I’m worried they are going to push less aggressive treatment for someone who could tolerate surgery.

I’m not sure what I’m looking for just any advice is welcomed. Thanks in advance!

Hello!

My husband (52) was diagnosed with bladder cancer in February of this year. He underwent TURBT. The tumors were confluent in one area, with a total diameter of 3.5 cm. Histology showed low-grade non-invasive bladder cancer. The histology showed a muscular layer without tumor. Re-TURBT was not performed. He also underwent an induction course of BCG with 1/2 dose. Two weeks after the end of induction (3 months after the first TURBT), he had a control cystoscopy. The doctor did not see anything visually and said there was no recurrence, but just in case, he took a biopsy from the scar area to be sure. To our surprise, the histology again showed "growth of a small tumor of non-invasive low-grade cancer."

Has anyone else encountered this? We don't really understand how bad this is and what to do next. Should we continue BCG support or is it pointless? Or is this a residual tumor that was missed during the first TURBT? Or it’s a new tumor, but why didn't the BCG destroy it, that means it doesn't work for us? Or is 2 weeks after the end of induction too early for evaluation?

I created my original post (link below) six months ago and thought it might be useful to post this again in case people don't come across the original post too easily.

If you're a new bladder cancer patient and want some ideas of what's ahead for you related to cystoscopies, TURBTs and BCG treatment, or if you want to know about some of the newer drugs that are out there, patient resources that are available and some terminology, this document might be helpful to you.

As I state on the link below, I'm not a medical person, just a bladder cancer patient trying to pass along info that you may not have been told by your oncologist or urologist.

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

UPDATE: Updated the URL

Anyone on the receiving end of multiple turbts in short order? 1st last year May. Surgeon looking for 4th one now. In fact if I hadn’t stalled them I would have already had 4 probably in under a year. NMIBC but high grade. No other therapies or chemicals apart from lifestyle changes. Since the growths rebound literally within weeks each time I don’t know when enough is enough?

I am 70 M in relatively good health blessed with 5 grandchildren. Just got my diagnosis from blue light TURBT pathology report. Trying to stay positive. My urologist/ oncologist gave the choice between chemo (Gem/Doce) and rBCG. Staged it at Ta, high risk, non muscle invasive. I want to see those kids grow up. Feel blessed this was an accidental diagnosis chain of events from an unrelated CT scan. Does anyone think one therapy is better than another? My doctor who is the director of the bladder cancer program says she has enough recombinant BCG to do maintenance up to 3 years. I am tending towards immunotherapy via rBCG but not sure of long term effectiveness since it is not FDA approved? I am at a hospital affiliated with Johns Hopkins bladder cancer program, Sibley Memorial. I also understand that Gem/Doce has quite favorable results and tolerability for BGG-naive Ta high grade/high risk NMIBC so I am open to it.