Topic: Cholangiocarcinoma without symptoms or pain.
I just wanted to put in a post for those CC with untreatable tumours.
When my husband Ray was diagnosed almost 20 months ago he was given 6 months to live and I scanned this site for information about the disease and what treatment we could have to make things better. Although this site is extremly informative and helpful, as a newcomer it is also very frightening.
Unfortunately his tumour was 8cm intrahepatic with satellites in both lobes when he was diagnosed. We discussed treatment with the oncologist and we decided as Ray didnt have any symptoms we would not go down the chemo route until he did. For the next 18 months we spent the time going places and seeing people and just doing whatever we wanted.
Two months ago the Oncologist said the had "lost his nerve" as the tumour had grown to 17cms and Ray started with Gemcitabine. The only side effects he had with this was tiredness on the second day, and at the next scan showed it was working and the tumour had stopped growing. However three weeks ago he developed Jaundice, and they tried a stent, but this didnt work as the liver was already not working properly. Consequently he was taken into hospital two weeks ago and passed away quietly last Sunday.
The thing is that Ray did not have any pain at all from this CC, only discomfort over the last few days due to fluid retention and acites.
When you are first diagnosed, it is quite scary reading about everything people are going through, and all the pain and suffering.
I just wanted to say it is not always like that. I know we have been extremely lucky, Ray was not afraid of dying but was afraid of being in pain for a long time and it never happened.
No doubt many people do battle this disease with great bravery over many months or years, but there are instances when the end is swift and painless.
So please dont worry too much about what will happen during the course of the disease as we did, or just wait for the illness to take hold, forget about the future as much as possible and just enjoy the time you have at the moment.
All my love and prayers to you all.