Bladder Cancer Group: Introduce yourself and connect with others

Thank you for sharing. I hope your husband is doing well.

Rick

Hello @rickfromaz, My husband had that surgery at Mayo MN in December of 2022. He is glad that he did it, despite many complications and surgeries. He does need to self catheterize 4 times a day but can also urinate on his own some. Here is a link to details that I shared about his surgery and complications:
https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/
Others have had a smoother journey with this surgery, but we have decided that if there is the smallest chance of a problem, he will experience it. Should be playing the lottery......
He remains free of cancer as he just had CT urogram last week and he is down to just doing that yearly.

I have been battling with aggressive high grade Bladder Cancer since October of 2021. I have had a total of 12 surgeries to remove tumors, the latest of which was 2/24/25. The previous surgery was in September of 2024 to remove 4 tumors. I have undergone multiple treatments including a trial drug at Mayo. The staff, nurses and my Doctor, Mark Tyson, have been wonderful and helping me battle this cancer. After this last surgery, Dr. Tyson has recommended that I proceed with removing my bladder due to the high frequency of the tumors return and quantity and size. I'm scheduled to get a neobladder operation on 3/31/25. I would love any feedback from those who have undergone this procedure and your experience with this surgery and how life has been after.

Thanks Rick

Thank you, Sue. Your reply is encouraging and I hope and pray the cancer cells are eradicated.

So sorry to hear you have bladder cancer @babz0518. My husband was diagnosed with a highly aggressive UCC in 2019. He also had a reaction to the post operative chemo infusion into his bladder. He was on BCG for the full cycle and into maintenance when he had another tumor so different treatments followed. His initial BCG infusions gave him more side effects and those lessened as he went along. Everyone is different in the way their immune system reacts to BCG though. Listen to your body and rest. Your immune system is responding to the BCG and actively working to control any new tumors in your bladder. Good luck with this treatment.

Thank you 😊

Have 2.5 cm tumor in bladder close to tube from kidney.
Will have it removed on March 7thi hope the pathology report comes back ok.

I was diagnosed with bladder cancer in August 2024, had two small cancerous tumors removed. Another issue was the chemotheraphy drug that was placed in my bladder after surgery caused me to have a funny taste in my mouth and 10 days later, quite a bit of my hair fell out. My urologist said it was hereditary but I have my doubts. I also had a Foley catheter in for 4 months. What an experience!
Now I have started BCG treatments and that really took the wind out of my sails, my BP was elevated and extremely tired for 5 days. I have 5 more treatments and wondering if the treatments will be as prevalent as the first treatment. Please advise. Thank you
Barbara

Hang in there and go with the earliest urology appointment you can get. AND make a CT Scan appointment NOW so your urologist can see your bladder on the scan, at your appointment.
I had the same symptoms as yours.
I got a CT Scan a month ago, and the tumor was there .
I am going in this week to have it removed. Be proactive, and schedule appointments. PLEASE DON'T WAIT.

Join the club. In my area there is a 3-4 month wait for any specialist.

Absolutely call a Urologist. Call your your primary to see if they will give a script for a CT scan. All urologists want a CT scan.

I went to the ER when I was urinating red blood. I knew the urologist I wanted so I had the hospital call the doctor's office.
A little trick that might get your appointment sooner. Ask to speak to the PA for the doctor. Almost all doctor offices will have a PA. The PA got me in to see the doctor in 1 week. I did send the PA the CT scan report from the hospital. She said I was an urgent case.