choledochal cyst

[Linsw]

hi everyone I’m a first timer here my very first post I am a 31 year old woman, Im looking for a little bit of information I have recently been diagnosed with choledochal cyst type 1 along with 100s of little cysts/polyps in my liver and some cysts in my gallbladder, my consultant has told me this is very rare and he’s never dealt with this before that he is going to talk to consultants in edinburgh to see what they suggest he should do, he has said I might need 2 surgery’s one to take my gallbladder out then hopefully that takes my symptoms away then to have another big surgery to remove the choledochal cyst in a few years, I have family history of cancer most of my family have had cancer and died with it! when I read of on the type one choledochal cyst it says there is a chance of malignancy so waiting a few years for the op isn’t great. Just curious to see if anyone else has had this and what then happened or what your consultant done/said about it.

Thank you.

[Readlots]

Hi Linsw, I’ve never heard of this I’m afraid so I won’t be able to help but the BLT helpline is very good and might be able to give you some advice. I know Edinburgh is a specialist centre so hopefully you’ll be referred there for some expert care. Good luck

[Linsw in reply to Readlots]

Thank you for replying x

[Readlots in reply to Linsw]

You’re welcome, I know how scary any diagnosis can be especially when you have a family history of cancer. It can take time to get your head around it and get used to the situation. And just because others have died, doesn’t mean you will. They’ve identified the illness and they are putting together a treatment plan. It’s going in the right direction. Be kind to yourself and talk to your nearest and dearest about how you’re feeling.