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Bladder Cancer Group: Introduce yourself and connect with others
Welcome to the Bladder Cancer support group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with bladder cancer or caring for someone with bladder cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
Feel free to browse the topics, use the group search to find answers to your questions or start a new discussion.
Pull up a chair. Let’s start with introductions.
What type of bladder cancer were you diagnosed with? What treatments have you had? How are you doing?
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Dr Mark Tyson did the same surgery on me. The neobladder takes getting used to and living with. But it is for the better
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2 ReactionsDiagnosed CIS recently
Stage 0 and 0is
Had biopsy
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1 ReactionHello Mark. No one wants to think about losing their bladder, but life can go on without it. My husband has a neobladder but has to catheterize 3 times a day. His surgery was at Mayo Rochester and he had lots of complications but is very glad he chose this direction as his scans have remained clear. Will you have an ostomy or neobladder?
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3 ReactionsCongratulations on clean scans. My husband had his neobladder surgery in 2021. His bladder control improved over time with proper exercise use but he still has leaks at night. He used pads in underwear for the first couple of years. Strictures have caused him issues and he must now use a catheter 3 times a day to empty bladder and keep urethra open. Pelvic floor therapy is helpful.
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1 ReactionThank you
@marklilly Hello, my husband was also stage 2 MIBC. This winter, he did 4 rounds of Gemcitabine/Cisplatin. On May 29th he had a radical cystectomy and is doing well. It’s a plus that you’re in good health! You get back on your feet sooner. You are in my prayers 🙏God bless, Rose
Thank you for the welcome. I'm Diane , 69, I was diagnosed at 62 with bladder cancer. It was by accident it was found. No symptoms at all had a cystocopy. And found cancer. Removed aggressive cancer had the 6 injection of the BCG and just had another cystocopy done last Friday and I'm still cancer free I thank God every day.
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4 Reactions@dianeh330 God bless you, Diane. Praise God for all His blessings!
I was the pioneer for bladder cancer in women!!! I was a man's disease! Rampant in returning soldiers that took a specific drug for pain! Diagnosed in 1977 by a lucky visit to a Doctor at Swedish in Seattle!! I actually said I have bladder cancer ( blood in urine!) don't I? He offered my a study which was BCG ( tuberculin vaccine). By the was I am a Pharmacist!. I was injected with it and skin scratched once a week for about 6 weeks. Your T cells kick in and fight i! I was cured!!!!!!! I did research and found I was taking lots of drug soldiers took. related to Excedrin. It contained a drug Phenacetin. It broke down to acetaminophen and a cancer causing drug!! I was responsible for a formula change! They knew!! Hired attorney and sued 2 drug companies. Now safe to take!!
still in the healing process on xarelto seems this may be slowing things down