Keratinising Squamous Metaplasia of the bladder

Booboo54 1 hour ago

3 replies
80 subscribers
41 views

Hi all.

I'm new here and have the above diagnosis. It isn't actually cancer but it's a precancerous condition. It's pretty uncommon and I'm finding it really hard to get support. Does anyone else have this here or know of anyone who does or can point me somewhere else?

I have a 20-40% lifetime chance of developing bladder cancer and my consultant has firmly recommended I have a bladder removal and neobladder constructed. At the moment (it's 2 years since I was diagnosed) I've declined this operation and am opting for surveillance instead but I would love to hear from anybody who has had bladder cancer and has had a neobladder. Or anyone who has KSM or any other premalignant condition?

Many thanks

rily 42 minutes ago

Hi Booboo54 and welcome, although I think you may have been with us in the past. Not familiar with your condition. Regarding bladder removal, we have several members here with experience and I am sure they will be along to help. Best wishes.

Best wishes to All, rily.

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winkers60 19 minutes ago

Hi Booboo54,Welcome to the group.I had KSM for 14 years as a result of many years of Interstitial cystitis.It was found in 2005 and I was placed under cancer surveillance.In 2019 I developed Squamous cell bladder cancer and needed urgent bladder removal.I’m cancer free now and have a stoma.I regret not having the cystectomy before I got cancer though.KSM is rare the urologist who diagnosed mine had only ever seen one other case and that was in an old man.There is lots of support and advice here so I hope you will find the forum helpful.Jane

Booboo54 16 minutes ago in reply to winkers60

Hi - how amazing to find you. I’ve never heard of anyone else with KSM. Out of interest, why do you regret not having the surgery earlier?

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