Hello
I was just wondering if there is anyone out there in the same position as me… I had a complete cystectomy aged 6 months and had USM done, then redone when I was 3 yrs old. I had chemotherapy but not radiotherapy.
I have never had a problem with malignancies and am about 90% continent. I have had a partial nephrectomy though (aged 12), kidney stones, and have lost count of the number of UTI’s I’ve had. Usually hospitalised annually due to pylenophritis but overall kidney function is pretty good considering.
Anyway, my main worry is this threat of colo-rectal cancer. I’m having the pre-emptive colonoscopy’s every 2 years, but I’m at the age where I’m prime target for a tumour occuring again. (on average, people with USM’s are at a high risk of colo-rectal cancer 20 – 30 yrs after the operation) I’m almost 29 now.
Anyone else in a similar position? I know it’s rare, I’m always the youngest on the wards by about 50 years! I just kinda want to chat to someone in a similar position.
I also would like to know what medication people are on? And has anyone else got a benign tumour in their liver as well now?
I just need a support network i suppose! help!  :-/
thank you all for reading my post.
Lots of luck and love to all experiencing difficult times.
alipoole
xx