Bladder Cancer Group: Introduce yourself and connect with others

@lititaly, it is overwhelming to say the least. How is chemo going? How are you doing?

@dianeoh26 I see that the blood cancer post was likely a spell check correction.
My husband had a muscle invasive highly aggressive bladder cancer and with cystoscopy every 3-4 months following initial treatment he had regular recurrences. Mayo Urologists said that was expected with his cancer, hence the frequent scoping. I know of patients who continue for many years treating their noninvasive bladder cancer with TURBTS over and over. My husband tired of this after a few years and elected a radical cystectomy with neobladder for a cure. Despite many complications, he is cancer free and happy with his decision.
What treatments have you had for your bladder cancer?

@vlewis that sounds terrible to be ongoing for so long. My husband didn't have radiation for his bladder cancer but never had burning like that with chemo. He ended up with a radical cystectomy and neobladder due to recurrences but is cancer free curently.
What do his doctors say about this prolonged symptom? I know from my experience with head and neck radiation that it takes a LONG time to heal the burns and damage. But after 70 Gy of radiation, my mouth and skin were healed and not painful by 6 months after it ended.
Have you considered a referral to a large cancer center or teaching hospital that specializes in Urologic cancer? I hope more patients chime in here with their solutions.

@vlewis - I have read all that everyone is going through or has gone through, I can really understand, and feel for you... But I didn't see anyone having the issue of the constant burning after the radiation treatment on the bladder. It has been a year and a half since his last radiation treatment. Does anyone have or had this issue? If so did you find anything that helped? Because everything that has been prescribed to him so far has not worked.

Diagnosed with NIMBC.
I had one recurrence of non-invasive bladder cancer within three months of a clean cystoscopy. Could anyone tell me how often this type of cancer returns?

My husband had Muscle Invasive Badder Cancer. He had immunotherapy, chemo and radiation. He has been a year out cancer free, However. He has constant burning to urinate, and even when he isn't urinating. He urinates 14- 20 times a night. at least it is better than when he was going 45 times a night. or every 5 minutes. He has tried all kinds of meds to help with this.

Has anyone else had this problem and found a way to relieve the constant burning pain?

What to except towards the end.

Hi, bladder cancer stage 4 . I guess I will starting chemo next week. This is so overwhelming.. no symptom’s just found a lump bam cancer throughout my whole body is it worth the chemo.

I am 71 years old, active all my life and now enjoying my retirement, living on an agricultural property with my wife of 49 years along with children and grandchildren in Hawaii. I have never had any serious health problems
Starting at the end of 2023, I was experiencing periodic hematuria in my urine. There was never any pain involved and the hematuria was lightly colored on the occasions that it was present.
In July of 2024, following a CT scan I was diagnosed with a 6mm stone in my left pelvic kidney. It was removed by laser Lithotripsy in September of 2024. At my 6 month follow up in March of 2025, I was still experiencing the same periodic hematuria with no pain occurring. Imaging was ordered which revealed nothing substantial. Next came a Cystoscopy on June 1st 2025 which revealed a suspicious bladder mass with possible malignancy. The 3-5 CM mass was resected July 18th via a TURBT procedure and Mitomycin-C was instilled.
On July 23rd 2025, I was diagnosed with High Grade Urothelial Carcinoma. The pathologist really felt that a definitive diagnosis of non-muscle invasive could not be made. Another resection of the base was performed in August of 2025 along with Mitomycin-C again instilled. Pathology confirmed NMIBC. A three-year BCG instillation plan was recommended and began September 29th 2025 BCG (live) (Tice BCG) 50 mg in sodium chloride 0.9 % 50 mL bladder instillation. This was the first of the initial 6 BCG instillations.
My experience during all 6 BCG instillations proved to be exactly as my Urologist described it would be; flu-like symptoms headaches, tiredness and urinary pain that would disappear within a few days.
On December 8th, 2025, a follow up Cystoscopy showed no signs of Tumors; however, it was noted that There were multiple areas of patchy erythema in the same area of the removed Tumor. The assumption was that it was a residual irritation from the first round of BCG instillations.
The second round of three BCG instillations was scheduled for March 2026. Beginning with number 7, I experienced a notable change during the recovery process. The flu-like symptoms became more severe and the need to sleep lasted much longer than previously. Notably, the ureter pain increased substantially and remained longer than during the first round. Instillations 8 and 9 proved to be more intense each time and the need to urinate often.
Since my 9th instillation on March 17th, the pelvic pain did not disappear, in fact it had been nonstop 24 hours a day, sleep was quite difficult as the shooting pelvic pain with the urge to urinate occurred every 30 minutes. The pain I feel can be described as if shards of glass are traveling through my penis. The pain seems to travel on the underside of the penis into my lower pelvis and on occasion can be felt like a needle inside my right big toe.
It has been 60 days since the last BCG instillation. My Urologist along with my primary care doctors have prescribed some medications to address the nonstop pain; Tamsulosin, Gabapentin, and Phenazopyridine. The relief was minimal and intermittent at best.
My next Cystoscopy is scheduled for June 1st. The goal is for no signs of Tumors. My discussion with the Urologist will be about no longer pursuing the BCG treatments as they have gotten worse each time and have become intolerable. Since March I have had no quality of life as I have not been able to leave my home for any length of time and the need to always be aware of where a bathroom is. The pelvic pain prevents me from even doing simple tasks around my home.
It has been helpful for me to review the comments and experiences in this forum, helping me to understand and cope with my bladder cancer. I apologize for the lengthy history but felt it could provide some food for thought for others beginning the bladder cancer process or having been through it already.

Thank you so much for reaching out. It sounds as if your husband has had quite an ordeal. Can I ask how old he is? I'm just afraid that with my husband being 80 years old, he would not be able to withstand such intense treatments, surgery and possible complications. We went to the first post op appointment yesterday and the pathology on the specimen has not even been done yet. The doctor called the lab and they didn't even pick up the specimen until Tuesday, so now we go back in two weeks for the results. We are in limbo because he mentioned that if there is muscle involvement the best treatment is cystectomy. I was hoping that they would at least try radiation and chemo first. I am just hoping that the tumors did not infiltrate the muscle but mentally I am preparing for the worst. We won't do the surgery until we get a second opinion at Johns Hopkins. You were lucky to have the Mayo Clinic. Right now he still has frequency and burning from the procedure but at least the catheter is out. Thanks again for your note!