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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!

@neisie13 You are right, cancer certainly is life changing, but hopefully can be managed to control if not cure the cancer. My husband had a highly aggressive muscle invasive bladder cancer that was also missed by local doctors. At Mayo Clinic ha has had multiple Turbts and chemo and was a BCG failure once on maintenance. He had minimal issues with the BCG treatment tho. He ended up after two years of recurrences choosing radical cystectomy and neobladder formation. He has been cancer free, must self catheterize 3-4 times daily, and is happy with his choice. It was a massive surgery though, with multiple complications during the healing process. It sounds like your new urologist is on top of the diagnosis and treatment so you were wise to switch. Referrals and second opinions are valuable. Good luck in this journey.

My 75 yr old hubby has been dealing with kidney then bladder cancer since fall of 2023. He's done several trials with no lasting effect and had the offending kidney removed. Too late though because a tumor had already developed in his bladder. After a TURBT, he has been on a mytomycin, Zusduri, once a week for 6. He just had his third one, and has an irritating rash all over. If there is something rare, he'll get it! The other two had no reactions other that feeling tired for a few days. He is also on Keytruda infusion every 21 days. He's done well with that. We just keep on keeping on....

@neisie13 good luck on TURBT recovery. It takes a while. Also, good luck on the BCG treatments!

On Friday my husband who is a young 80, had the TURBT procedure after a CT scan showed a tumor. The cystoscopy after this showed one large tumor and several other smaller ones that were high grade. He had been having microscopic blood in his urine for quite a while but the first cystoscopy a year ago didn't show anything. I feel that it was missed so that in itself is extremely frustrating. It was only taken seriously when he bled into the toilet. We immediately switched doctors. One of the tumors seen on Friday was CIS so the new urologist said that there is a very high chance of recurrence. My husband has a follow up at the end of the week so hopefully the pathology report will be back by then so we know where we are heading. So far, unless there is a major change, he recommended six BCG treatments that will start after healing and then another TURBT procedure. Then there will be very close monitoring. He is surviving the catheter which he can remove tomorrow and luckily had no spasms with it this time which he had after a Urolift two years ago. I know this is going to be a change of life situation and more so because of the high grade diagnosis. Thank you for reading this!!!

@ronniek check out this link to a recent discussion of this topic. https://connect.mayoclinic.org/discussion/neobladder-or-ileal-conduit-unsure/

My husband had cystectomy/prostatectomy/neobladder surgery at Mayo Clinic 5 years ago. We spent 2 years dealing with complications from the surgery. Others have had much better experiences. He is still satisfied that he made the right choice. He must self catheterize due to scar tissue but that became routine pretty quickly. Continence is good with minimal leakage only at night. He just did not want to deal with a stoma.

Husband diagnosed with high grade bladder cancer. Has had BCG treatments and surgery to remove a tumor. Just recently informed that microscopic urine test was still positive for cancer cells. Scope indicated another tumor. Been doing a lot of reading, research etc about ileal conduit and neo bladder. Would very much like to hear from someone that has had bladder and prostate removed and which procedure those chose.