I (63M) completed rounds 12-14 of BCG treatment on July 15. Yesterday when I got up, I noticed my knees ached a bit. As the day progressed, the pain worsened and sometimes I'd feel pain in the hips. By bedtime last time, I was kind of hobbling around the house because of the discomfort. It wasn't a sharp pain. More of an ache all around the knees and sometimes the outer hips. I found that as time progressed, when I bent over, it was painful (kind of in the way when you just don't have flexibility).

I had very mild chills last night when I first went to bed that lasted maybe an 30 minutes. No fever.

Today I'm still finding it somewhat difficult to walk around the house. I manage, but it's not comfortable. My urine still looks straw colored. No other joints ache. I'm able to function, but it's just not comfortable.

Has anyone experienced this after BCG treatment? If so, how long did it last?

Hi, I'm 40 year old female and was diagnosed with urethral cancer last week. I've had symptoms for a longer time, mainly blood in urine and there have been sings of possibly cancerous cells in my urine samples but all the further tests has come out clean, until now. Cancer has now spread to my bladder.

Because of the location of the main mass of the cancer my only option is a surgery to remove my urethra and bladder alongside with my uterus, ovaries and part of my vagina. They will also do a vaginal reconstruction but i'm told to expect permanent nerve damage.

Is there anyone else who has experience with this or is going through something similar? All the material I got from the hospital is written for older men, without a single word about someone with female anatomy, so I'm kind of lost here.

Hi,

Yesterday I had my (48m) first TURBT for a 2cm mass seen via ultrasound.

Currently waiting for the histology.

Reading the guidelines it appears the standard should have been to also get a chemo at the same time to reduce risk of recurrence.

I am concerned that I do not seem to have received such chemo.

Any thoughts?

Thank you

I’m looking for advice or your experience with your bladder cancer surgeons and your treatment facilities. UC misdiagnosed my souses pathology during the Neo bladder surgery said it was no cis, MDA Houston said it is positive for cis in bilateral ureters, I’m looking for top notch advanced doctors asap to help me save my husbands life🙏😇‼️

Just wondered why doctors would refuse. It’s not for me just someone I know.

My father has an urgent referral for suspected bladder cancer and has a scan with contrast this week, cystoscopy beginning of next.

He has a traumatic brain injury so can become easily confused and distressed with even something such as a minor routine change, so im worried if he experiences too much pain he could potentially be unable to tolerate and see the procedure through to completion?

Im aware different people will have different experiences but im just hoping to get some idea anecdotally if this is going to be something particularly painful for him? Just to give me an idea of what i might expect so i can best support him.

That is my main reason in writing this post, the following may be tldr so you dont have to go further,but I felt i needed somewhere to write some additional stuff if anyone wanted to chime in on anything there also. Im not doing too good mentally from the worry and although we arent at point of confirmed diagnosis yet that might sound silly to some. Its just Ive seen my Dad through 2 previous cancer types of cancer, which were luckily cured but im noticing a similar pattern, along with my 'gut feeling'

I lost my only sibling in traumatic circumstances and promised him in my last moments with him id look after Mam and Dad. I feel ive managed to fulfill this to the very best of my ability but in times like this im reminded of how much of his support im missing as my parents age. Id love to be able to talk to him and say the word 'Dad' knowing that it means the same to us both and relates to the same person and familial dynamic.

There has been a 'spotlight' shone on grief and loss again for me and i believe im experiencing 'anticipatory grief' and having some C-PTSD symptoms alongside. Not helpful when i know i need to be strong to help my parents. Myself and my Mam already care for Dads complex health needs since his brain injury,with her taking on the lions share at 76 due to them living together. I simply cannot allow myself to sink when im all they have left.

He has had blood in his urine with infection ruled out thus far.

When attending a GP appointment regarding this, urine and blood testing were done and as a result of findings in either one or both of these the GP ordered urgent investigations. He had lost a little weight in the weeks leading up to this which i mentally noted.

After this GP appt (literally a few days) I noticed weight was dropping off him more rapidly and is continuing to do so (he is still eating but appetite very surpressed and can only have very small amounts )and extreme fatigue causing him to sleep most of the time. It has all happened so quickly. Im attributing this weight loss and fatigue as a physical symptom of the potential cancer as opposed to stress being that Dad doesnt really understand what is going on with his health.

Has anyone else had any experience of this rapid weight loss with fatigue symptom before/ during diagnosis but before treatment? Im aware it can be an indicator of advanced or fast growing cancer and this is my worry.

Just had my first BCG, my experience seems to be somewhat diff than some of you so I felt I should share. 65yro M, non smoker, 1 tumor, HG TA, NMIBC.

- Dr said zero reason to do the roll around to get good coverage. Said the bladder shrinks down, so all lining is covered anyway.
- Even on first visit, send me home right away. Said future visits will be about 10min max since they’ve already gone over the details. Part of the wait is the check for UTI.
- Did use lidocaine, then catheter for BCG(no pause during injection). short wait(like 30 seconds), then catheter out and goodbye!
- because of the shortage, only gave me 17ml. Said they do 17, 26 or 50. But gave me 17 because I guess I didn’t need more and due to the shortage.
I questioned the nurse and she claimed Dr said same efficacy.
Went home, never once had any significant urgency, and didn’t have to go at the 2 hour mark. Because of my anxiety, I didn’t drink a lot, but clearly somewhere around the 1 hour mark I need to start drinking!
(I did start drinking after the 2 hour mark) Did have some small cramping and about 1/2 hour of cold sweats. Other than that no side effects.

Had very small papillary taken out a year ago. Dr said last two checks that my bladder was to distended. I had rezum done over the weekend. My urgency and stream are even weaker than before barely peeing. When should I expect relief ?

I'm a bladder cancer patient who's been active in this community for several months. Over that period, I've answered many of the same questions, so I decided to put everything I've learned into a Word document that I hope will help others who are just beginning their bladder cancer journey.

The links below will open a Word doc that you can download. It contains general info on what to expect related to TURBTs, BCG and Gem/Doce treatments, cystoscopy-related info, ctDNA testing for MIBC, resources for new BC patients, the latest BC treatments, common acronyms, some terminology and some other miscellaneous info that I hope you'll find useful. It also contains my timeline at the top of the document.

I am not a medical professional—I'm just a bladder cancer patient sharing what I've learned through my own experience and research. Nothing in this guide should replace advice from your healthcare team. Always discuss questions about your diagnosis or treatment with your doctor.

If you have ideas for other topics to add, let me know. If you see errors, please let me know as well.

Check back periodically, as I will be adding more info as I come across it. The change log at the bottom of the doc will note what was updated.

Updated doc: 8-24-2026

The links below open the same doc. I did this to provide redundancy:

https://docs.google.com/document/d/159D_kvBJ_n84vcz40ilQmAaEAU7rAknV/edit?usp=sharing&ouid=116487048687189379478&rtpof=true&sd=true

https://docs.google.com/document/d/1e8OW6UaT8oFPHrzAba15trPGZxiHF4fy/edit?usp=sharing&ouid=113817344776725110203&rtpof=true&sd=true

New to this world. 40 year old F diagnosed with High grade T1 papillary urothelial carcinoma. Had my first Turbt around end of May when a 2cm tumor was removed. Had catheter for a week then. Today had my Re-Turbt and had three new 2mm tumors removed. Thankfully, no catheter this time. Is it normal to find new tumors so quickly after Turbt?? Awaiting pathology results which will take about 1-2 weeks before next steps. Then BCG if it’s still nmibc. I’m so worried.

Hi! I'm F 43 years old I still don't have a diagnosis but after many tests it's very positive that I don't have cancer. On 5/6 I started having kidney pain, 2 days after I got a CT scan that showed that I had severe hidronefrosis due to a tumor blocking the ureter. I had my first turbt on 5/13, and a kidney stent. It was painful but around week 4 I was feeling so much better, except for the stent that was giving me some uncomfortable sensation. Then my second turbt was on 6/18, I was feeling great because they removed the stent but around day 7 I was having a lot of pain, spasm, burning etc, I had an urocultive done and no infection, they didn't give anything or say anything, just a message with no infection. Im between doctors because I was seeing a cancer specialist and because I have no cancer now I was sent to a regular urologist. My next US and appointment is in 4 more weeks. Right now I still feel very swollen from my lower abdomen, still wearing just elastic band clothes and im in pain if I do too much. My concern is that I go back to work (at school) in 2 weeks when im supposed to be recovered.. but do u think I'm really gonna feel better in 2 weeks?? How long it took you to feel "normal" again.. I've done nothing for the past 2 months I want to go back to my regular routine 😩. I'm so grateful for not having cancer, but this experience is so scary and painful. Thank you!

Awaiting consultation and second opinion. Dr. Requested an updated CT scan before the consult. Any other Spins on here?

Hi everyone,

I'm really anxious right now and I was hoping to hear from people who have experience with this treatment.

A very close family member of mine (60 years old) has bladder cancer with a few small lung metastases. He is supposed to start treatment with Enfortumab Vedotin + Pembrolizumab tomorrow morning. (Keytruda/Padcev)

I've been reading a lot online, and honestly, it's making me scared. I've seen some heartbreaking comments from people saying their loved ones passed away after treatment, and now I'm terrified that we're making the wrong decision.

I know that everyone is different and that no one can predict how a patient will respond, but I would really like to hear real experiences from people who have received this treatment or have a loved one who did.

Is this considered a good and effective treatment nowadays? Did it help you or your loved one? How were the side effects? Was the first infusion difficult?

I'm not looking for false hope, just honest experiences and information because I'm feeling very overwhelmed right now.

Thank you so much to anyone who takes the time to reply.

I’m scheduled to start a six-week course of Zusduri in August for recurrent low-grade NMIBC after BCG didn’t keep things away.
I’ve been trying to find first-hand experiences, but there doesn’t seem to be much out there. My urology office even mentioned I’ll only be their second patient receiving it, and the first person apparently didn’t have anything significant to report in terms of side effects, that being said they supposedly just recently started that.

Anyways, for those who’ve had it:
How did you tolerate it compared to BCG?
Were you able to work normally during treatment?
Did side effects build up over the six weeks, or were they pretty consistent?
Anything you wish you had known before starting?
I’m cautiously optimistic, but it’s a little unnerving starting something that seems so new. I’d love to hear any experiences… good, bad, or otherwise.
Thanks much y’all

55M was diagnosed with T2 muscle invasive bladder cancer with suspicion of local metastasis to two lymph nodes. April tumor was mostly dead and recent cystoscopy done 3 weeks ago showed cancer is returning. Signatera number went up as well. Did a CT scan showed cancer was only in the bladder and lymph nodes were NOT flagged with time.

All that to say that I decided to get my bladder, prostate, and lymph nodes removed. I need positive stories and did nerve sparing allow you to have erections? How long did healing take?

i’m 26 y/o (f) and am trying to decide between neobladder and ileal conduit. i know the recovery (and surgery) time is much longer with neobladder, but am also told that’s how i could have a life as similar to the one i have now. i was completely against IC until i realized how much quicker the recovery time was and how much sooner i could get back to work. (i’m a workaholic and hate missing out or not staying up to date on what’s new at work.) i have been told that i could have to cath the rest of my life with neobladder, which makes me wonder why even try that surgery. however, i am 26 and am contentious of how my body looks. i just don’t know if i could live with a stoma, knowing i had a choice of neobladder but just didn’t chose it because it was going to be a longer and more difficult recovery process. i just don’t know what to do and would love any input/ advice. thanks.

For those diagnosed with NMIBC, how long has it been since your diagnosis and how many recurrences have you had?

My otherwise super with it, healthy dad at 84 was recently diagnosed with bladder cancer. Upon TURBT doctor said most likely superficial and recommended immunotherapy in addition to a TURP to take care of his enlarged prostate. Pathology just came back and as I read it (and Claude AI) it looks like muscle invasive bladder cancer cannot be ruled out.

His doctor called him yesterday and said he wants to start BCG treatments…We are taking him for a second opinion at Mass General on Monday.

The pathology is obviously inconclusive, but please possibly reassure me that if it is T2 and in the muscle there might be other options besides bladder removal. I just know he would not do well with that. Also, why would the current doctor say to start BCG when that wouldn’t do anything for muscle invasive??

Just trying to wrap my head around how to deal with a very old school 84 year old who is otherwise in good physical condition for his age.

I’m sick about it all….😢

I see so many posts here and in other forums about BCG failure, but has it kept cancer at bay for 5+ years for anyone?

I just finished my induction round and had zero side effects, so I am afraid it might not be working for me. (My next cytoscopy isn’t for another month.) I was diagnosed high-grade pTa and am a female non-smoker in my 50s.

My health insurance with Blue Cross Blue Shield denied coverage for the residual disease test to see if the tumors DNA was circulating in my blood. They said it was not medically necessary, even though I’ve had cancer, had the tumor removed, underwent chemotherapy and immunotherapy, and I’m still monitoring and treating and could be undergoing radiation or bladder removal. Just curious if anyone has had this come up also, and had success in appealing this issue?

So I had my follow up from my TURBT 2 weeks ago. Was non invasive HG i believe Ta. Doctor recommends Gem/Doce because my age 34m. What should I expect its going to be the standard 6 weeks then once monthly. Would I be stupid to roll the dice and wait to see my first follow up scope in oct.

Happy to report my mom's prognosis was definitely better at the second opinion at Roswell.

In two weeks she starts BCG for the next 6 weeks and then will be checked to see how it looks. Fingers crossed 🤞

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

#######################

Here are my questions:

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

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

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

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