Hi
i am 43f originally diagnosed with adenocarcinoma of the urachel remnant and referred to Guys and St Thomas hospital in London who say I also have squamous cell carcinoma.
I need to have radical cycestomy with bladder, uterus, and fallopian tubes removed and a neo bladder put in place.
all scans show that it is bladder confined but the surgeon and nurse were not willing to give me any comfort that it hasn't spread
I am scared of the surgery but I will handle it but I am so scared it has spread and it means I will die. I have two children and a wonderful husband.
After the appointment I do not feel very hopeful
Can any of you tell me how it has been living with a neobladder? Has anyone had experience of the cancer spreading despite the surgery and what the experience was from there?
Hi Mook and a warm welcome to the group. We know squamous cell is more difficult to treat but we have had many success stories here with this. Not had removal myself but we have members here living active lives with neobladders and should be along to help when they pick up your post. Best wishes.
Hi. Welcome to the group. I found this group extremely helpful when I was in your position this time last year.
I had a radical cystectomy in January of this year. I’m 57 and had a neo bladder. It’s a big operation and it’s been a slow recovery. But a lot will tell you the same it’s a marathon not a sprint. Little often is the best approach. Lots of support and a fantastic surgeon and urology team as well as friends and family.
I still use catheters when I struggle to empty by myself.
Myself and others on here know exactly how you feel and have been the what you’re experiencing now. Please feel free to ask any questions and I will be happy to answer them for you as will others when they read your thread. Best wishes to you at this uncertain time.
kind regards 
