Keratinising Squamous Metaplasia of the bladder

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.

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 

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?  

I haven’t come across anyone else with it either.I would have been spared years of pain and bladder cancer if I had undergone the cystectomy earlier.I found the KSM got worse as time went on and it got harder to pass urine easily and I kept getting urine infections.Do you have many symptoms ? 

No symptoms at all - in fact I feel in the best health I have for years.  I got diagnosed with KSM 2 years ago.  I’m 56, single, work full time and travel loads - I’m declining neobladder because it sounds so life changing.  Not in a great place atm as had my yearly cystoscopy today which was clear but the consultant reminded me again of the risks of not having surgery which brings it all back to me.  

We have been in touch before 2 years ago reading your activity.It must be hard being reminded of the risk.As my urologist said they have no way of knowing which patients may go on to get bladder cancer.

Were we?  I have a dreadful memory.  Where in the UK are you? 

I’m in Somerset.I didn’t remember your name but when rily said you might have been here before I read the old posts.

Is there any way of contacting you direct?  I'm not sure of the rules of this forum.  I have so many questions to ask.

Hi Booboo54 . You can talk privately with private messaging as long as the person accepts your friend request. Some people do not feel comfortable with friends requests and private conversations and prefer to stay in open discussions. It also helps others in future if things are kept public. Best wishes.