Hi I’ve been told I have a rare squamous cell bladder cancer in my diverticulum and spread to my lymph nodes my urologist has said there’s no treatment for this it’s unstage able and that they really know very little about this cancer but they said radiotherapy and chemotherapy won’t work against this I’ve had a further CT scan and it’s not spread further than before so I’m now on the waiting list for radical surgery I just feel so apprehensive on getting the surgery but know they say this is the best chance I have just all is a lot for me to take in
Thank you so very much for your reply I am so thankful that it hasn’t shown any signs of further spread since my last CT and hope I hear soon when my surgery is I feel so well and hoping to get a nice holiday with my daughter before getting the op but no idea when the surgery will be arranged but yes just need to keep feeling positive that this will let me beat this and have more time with my son and daughter they are my world
Hi FiM,
Lots of us here have had the bladder removal and lymph nodes removed. And you will probably have seen us saying it's a lot to take in but we have got through it to live a normal life. In my case there had not been spread to the nodes (but they took them anyway as routine to check).
I hope things go as well for you as they did for me. I was a little apprehensive too before the op - I'd had a TURBT but that was quick and easy to recover from. The removal took longer of course but as you're fit shouldn't be much more daunting. At least I hope not.
Let's hope you hear soon when it's scheduled.
All the best,
Latestart
It's only natural to feel apprehensive about such radical surgery. I was very relieved to find after mine, that I still felt I was me - no mourning lost bits. Yes, a challenge to recover and get used to new plumbing, but after a while it's just the new normal. Hope all goes smoothly for you.
Thank you so much I am getting my head around what things will be like but yes better to live without these organs than not be here with having the cancer spreading to more I am so relieved after them telling me the likely hood is that it’s already spread too much for any surgery to be considered so I’m feeling so much better to know I have this chance now I have full faith in the medics I have had many operations through my life and got through all of them so im hoping recovery will be fine for me from this too
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