Another Thorotrast possibility
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Oh, sorry I missed part of your question. I don’t believe they can tell for sure from the biopsy that she was in fact exposed to the thorotrast. What they found was two particular genetic markers for her tumor, that are also found in patients that have been exposed to thorotrast. But they can’t confirm that’s her case. They are just saying it’s a possibility.
Well what I found was that thorotrast was used widely in x-rays in the 30’s and 40’s. Once it’s injected, it has a half life of about 22 years. So it’s blasting your organs with radiation for about 30 years worth. With my MIL, they found genetic markers and mutations that must somehow be related to the same ones found in thorotrast exposed patients. I’m not aware of any changes to treatment because of these markers because they actually did the chemo for 6 months, and during her 3 month break, we brought up that the oncologist had mentioned sending a biopsy slide for genetic testing. That was when they found they didn’t get enough from the original biopsy when testing for cancer, so they had to do another one to get more material. The main reason they wanted it done was to see if there’s any clinical trials she may be eligible for based on the genetic makeup. But what we found with all the clinical trials happening near us, you have to have exhausted all possible resources and your cancer is still getting worse, so the clinical trials are basically a last ditch effort. She has been getting better so she won’t qualify for any clinical trials, but the dr did say there’s a newer fda approved drug out that’s for leukemia with the same genetic markers as her tumor, but it hasn’t been tried on a solid mass tumor yet. He said if they do need to start treatment, he doesn’t think it would be a problem to try the leukemia drug and see what effect it has. I don’t know the specifics, my wife went to the dr appt with her mother and didn’t think to even ask the name of the drug.
Thanks for posting this. I had not been aware that Thorotrast is linked to cholangiocarcinoma, so I googled it and there is a literature on the topic.
From your message, I gather that prior exposure to this agent can be seen via biopsy, and I gather from some of the articles on this that the exposure can sometimes be associated with some of the mutations that show up in genomic profiling of cholangiocarcinoma patients. Did your MIL have any actionable mutations found in her testing? Does prior exposure to Thorotrast have any implications for treatment?
Here is info from NCI on Thorotrast for any interested readers.
https://www.cancer.gov/about-cancer/causes-prevention/risk/substances/thorium
Regards, Mary
My mother in law just had a biopsy done to get genetic testing of the tumor and I was reading the report that came back and that was the first time I saw anything about Thorotrast being a possible cause. She did have xrays as a child in the 40’s and the literature says if they used the widely popular Thorotrast contrast in the xrays, they have 100 times more chance to get bile duct liver cancer than someone that didn’t have the xrays. In a way it’s a relief to my wife worrying that it’s genetic, but not much knowing that there’s a good chance this was caused by a medical procedure. I started looking up to see if there were any lawsuits and anything I saw said the patient cannot prove they were not warned about the use of the contrast. So the drug company that bought out the Thorotrast company can’t be held liable unless the patient can prove they were NOT told or given papers listing cancer as the possible side effect. I guess they are saying if you received the warnings saying cancer could be a side effect, then that’s your choice to continue, so you would have to prove that you were NOT warned….which is impossible of course.
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