I'm new here. I've read the posts from the last few days and just want to say how sorry I am to everyone who has a need to be be part of this thread.
My husband is 49. He was diagnosed with auto immune hepatitis just over 6 years ago, our DS was 1 at the time. It's been managed well with meds until the tail end of last year. He has been in hospital since early December, first locally then at a specialist hospital. We thought he'd be going on the transplant path, but we found out about a week ago he has cancer of the bile duct- cholangiocarcinoma.
It's rare and aggressive. It sits undetected until symptoms show, by which point it is usually advanced. It didn’t show on any of his scans etc. Only the biopsy confirmed it which was delayed by his extremely low platelet count.
It’s been staged as T4, N1, MO
The size is large and has spread into the liver (T4)
It has moved into some lymph nodes (N1)
It hasn’t spread to other organs (M0)
He may be able to have palliative chemotherapy but his fitness and liver function needs to improve before this could happen.
He is hopefully coming home tomorrow and is care will transfer back to local team and hospice support.
The consultant said he hopes he has months, but it could be weeks.
We have a 7 year old son, and although he knows daddy has been in hospital for 2 months with a poorly tummy, that's the limit of his awareness. I doubt want to ruin his innocence, but there is no choice is there? His whole world is about to be turned upside down and my heart is breaking for him.