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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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@pol7
I have Ta, high grade urothelial and CIS. A test of my pathology after TURBT showed BCG would not work for me, so I was put on the GEM/Doce treatment. I did 5 weeks of it, then a few weeks later, cystoscopy and was clear. I've just had the second of 12 4-weekly Gem/Doce and will be having 3-monthly cystoscopy.
Almost no side-effects.
Good luck for April
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1 Reactionwhat type of treatment?
@sharonlsorrell1953s i am in treatment for low grade noninvasive-first once a week for six weeks. Then a scope which showed no tumors. However, he is continuing treatment for once a month for 9 months with a scope every three months. My oncologist is being extra cautious and although my cancer did not spread outside the bladder wall I am doing what he recommends. I am not risking losing my bladder (which heaven forbid ) could occur but I don’t want any regrets or woulda coulda shoulda.
Was hoping to get some about bladder cancer. I go to the Dr. urologist May 31 for blood work ab see him. I have read alot about it but not really answer some question.
@sharonlsorrell1953s
thank you
My husband had a radical cystectomy/prostatectomy 4 years ago after a few years of treatments for highly aggressive urothelial cell carcinoma of the bladder, muscle invasive. He is happy with his neobladder and the new normal has him self cathing 4 times a day to empty completely. Incontinence is only an issue at night. I know how much against losing the bladder we were early in this battle, but aiming for a cure takes different pathways for each one of us. You do what feels right for you. New treatments are being approves all the time and saving the bladder is always the priority. Keep reading and researching and consider second opinions if your treatment options seem limited.
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6 Reactions@delavan
BCG didn't work for me. My Dr is talking about doing the Gen/Doce if needed after my next scope in April.
Had a radical cystectomy in June of 2023. since September of 2024 have has some bleeding from the urethra. The doctor felt a tumor and needs to do a biopsy. If cancer they need to take the remaining urethra. Anyone had this done? Thank you
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2 ReactionsLike to know what people think of not doing chemo for bladder cancer an do you know what the life is without treatment. I have now a 10 cc in my bladder
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1 ReactionI’m an 85 year old man, in good general health with a T1 high grade urothelial tumor with possible plasmacytoid features. Not muscle invasive, and Dr Tyson gave me a choice of BCG or cystectomy. For me, since catheterization is painful and cystoscopy is more painful I chose cystectomy. It is more definitive, and I won’t need to be looking at an endless series of treatments and possible eventual cystectomy. Always interested in more info.
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