October 23, 2018 at 11:18 pm #14111
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).October 24, 2018 at 10:09 am #14112
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 …
AMMF are currently funding research into genetics https://ammf.org.uk/institute-of-genetics-molecular-medicine-the-university-of-edinburgh-dr-luke-boulter/
I hope this information is useful to you.
Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.November 20, 2020 at 9:51 pm #16078
Hi Melanie, my husband got CC with BRCA mutation, inherited via his mother and grandmother, discovered only because his niece (breast cancer) had breast cancer and her tumour was tested for BRCA with 2 other family members having the same. I don’t believe the cancer is random, at least not always, we just don’t have the knowledge yet, but please do genetic testing if you had cancer in your family, wonder if your mother or grandmother had their tumour tested. Great Ormond is doing the tests and you need to ask your GP for referral. There may be a genetic link! Aga
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