Should I remove my bladder or try treatment first?

I’m not a doctor, but I went with the chemo and immune therapy after a year. I think my cancer is in remission, but I’m still on immune therapy. I’m waiting on a new scan. They claimed they had to remove my bladder. I refuse a let them do it. And I’m happy with my choice. I would think twice if I were you before getting my bladder removed. Wish you luck in your journey and hoping for the best for you

I had my bladder removed in October of 2024 along with my prostate! Went through chemo very easily, no issues,then 6 immunotherapy! My cancer is gone as of this week, but the immunotherapy has caused other problems, namely Rheumatoid Arthritis, which is very debilitating! I have had one infusion of Pem Garda which will be every three months, plus a monthly infusion of Orencia, which was just approved by my insurance! Its a relief to have beaten the cancer, but the side effects of the immuno are brutal! Im very happy to be cancer free, but the cure is sometimes pretty brutal with the onset of the arthritis!

Joseph Strong, how are you dealing with the urinary diversion after your bladder removal? They wanted to do the same to me but I couldn’t deal with it so I refused. I’ve had chemo and immunotherapy and just had another turbt which I am awaiting results from.

This is such a difficult decision that many in the bladder cancer community face. Making treatment choices can feel overwhelming, especially when weighing different options and their potential impacts on quality of life. Consider discussing all available options thoroughly with your oncology team, as they can help evaluate factors specific to your situation like cancer stage, overall health, and personal priorities to guide the best path forward for you.

Richard, there are challenges for sure, such as ostomy care, medical supply issues, cosmetic changes( bag shows under your shirt! But the upside is that my cancer is now gone, 1 year to the date of my surgery! Right now Im finding a lot of info via these forums and still have questions regarding my ostomy, but cant find one that deals specifically with my stoma, its care and other miscellaneous issues! Love to have some references!!

Joseph, did you have an ostomy nurse come to your home a few times a week to help train you on changing the bag and care of your stoma? They offered that service to me if I decided to go through with the surgery. I had a TURBT two weeks ago and an appointment with the doctor today to go over the results. I get a CT scan every 4 weeks and they have been clear so I’m hopeful the doc will have good news.

I had nurses in the hospital come to my side and show me how to change my bag! I had some subsequent home nurse visits and she was very good at showing me how it was done and assisted me on several occasions! My wife assists me now, but it would behoove you to try it by yourself in case you have to! It becomes a pretty simple task after so many bag changed! I have done it alone on a few occasions! I still have questions regarding my stoma care and question why its very sore at times! I find that forums like this one provide me with good, usable information and convinces me Im certainly not alone in this journey!!