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19 years after receiving a neo bladder
I dont have a question really, but interested in sharing and future research.
I am a 58 year old female, having had a diagnosis of late stage muscle invasive bladder cancer back in 2005. I had surgery at UCSF and received a neo bladder. Recovery was long and a few years of infections. Used a catheter for about a year before my urologist said the continuing infections would eventually kill me (due to a sulfur allergy,most antibiotics for bladder are sulfur based).
Back then there wasnt much info to tap into. I looked around the internet and found a group called The Bladder Web Cafe. I posted my dilemma and a kind nurse replied. She actually saved my life! She said the doc she worked for in Texas had developed a method of voiding without using a catheter. He coined it 'the Thompson method' (Dr Thompson). And Ive been using it ever since with rarely an infection.
I was only 38 when I was diagnosed. The youngest patient at UCSF to have the surgery. I was very healthy and active and a young mother. Im not sure why I got cancer, but it sure has taught me a lot.
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You are the definition of how to persevere! Praise God you found the sweet nurse to help you in your situation. I dont know why you Got cancer either so young but i do know one thing- God doesnt put anything in our lap we cant handle or learn from he has purpose even when we cant possibly know why-and our trials shape who we are or who we choose to be! You sound like a lovely strong woman with drive and determination-Thanks for sharing a part of your life with us! - I wonder if it wasnt just to help another person who is struggling in the way you did-He amazes me anew every day! Thanks again for sharing❤️
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3 ReactionsHello, I was diagnosed at 36 with bladder cancer. I was hoping to get more information from you about the Thompson method you mentioned. I may need to get a neobladder myself soon. Thank you!
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1 ReactionWelcome, @audreypark. I'm tagging @beecharmer in the hopes that she will see your question asking for more information about the Thompson method. The only information I could find was about an outdated and painful method developed by Dr. Thompson in the UK, known as the father of urology. Clearly this is not what she is talking about. 🙂
Audrey, you may also be interested in these discussions related to neobladder:
- Experiences with neobladder surgery for bladder cancer https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/
- What is involved in self catheterization with a neobladder?https://connect.mayoclinic.org/discussion/self-catheterize-with-neobladder/
Have you decided to get a neobladder? How are you doing?
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1 Reaction@audreypark this is an older post so she may not be active any longer. I just wanted to share with you that my husband has had a neobladder for 4 years now. After many complications his new normal is to self catheterize 3-4 times daily. While not ideal, he is cancer free and manages this situation well. Others have much better luck and can urinate normally. Don't be worried about self catheterization with a neobladder. Sometimes our new normals after cancer treatment just become routine and we can go back to enjoying life.
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