My maternal grandmother passed away from bile duct cancer last year, and less than 10 months later, my mother also passed away from it. I keep being told it is a rare and random cancer, but its taken two family members in less than year. We know that there can be a genetic link in families in many other cancers but nothing is being done in this area for bile duct cancer. I feel that I am more at risk from this cancer and would like to see genetic testing being developed to see if there is a rogue gene for it in my family. All the doctors do is fob me off and tell me we were just unlucky, but that’s what they said about families devastated by breast cancer 30 years ago. I am willing to submit my DNA for genetic testing, to try to find the rogue gene. Why is there no genetic testing being done for this cancer?
(Since May 2018, after mum’s death, I have heard of about 5 other people that have died due to this cancer, so it is not as rare as doctors keep telling me).
We are very sorry to hear that you lost your grandmother last year to cholangiocarcinoma and also your mother and can understand your concerns regarding a genetic link. Unfortunately, as far as we are aware, this type of cancer does not have hereditary implications and also, again as far as we are aware, currently there is no test to ascertain a person’s susceptibility to this specific type of cancer, nor is there screening for it.
You are quite right in that bile duct cancer is increasing in incidence and, in fact, the age of those affected is getting lower. We know there are some risk factors, and that there are other suspected risk factors https://ammf.org.uk/causes-and-risk-factors/ but, to date, no one seems to know why this disease is affecting an increasing number of people nor what is causing this. (Apart from South East Asia, and especially Thailand, where the known risk factor is the liver fluke, which is in the river fish eaten by the rural population).
Currently thinking is that environmental toxins, coupled with a particular genetic disposition, must be responsible …