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Robin's story

“My advice to other people who have cholangiocarcinoma considering molecular testing is that knowledge is power.”


I’m 67 years old, and I’ve been married for 38 years. I’m a psychologist who worked in private practice, and I have two daughters who live across the country. I also have one grandson and another one on the way.

I started having symptoms in June of 2017. It almost felt like a gallbladder attack; the pain was intense, and then it was gone. I went to the emergency room, and following a CT scan and some lab work, they originally thought it was gastrointestinal. However, I knew I had a family history of liver disease and was being observed for cysts on my liver.

At first, CT scans didn’t show anything, which was frustrating. However, after about 10 or 11 months and additional testing, a tumor was discovered in my liver. Because of the tumor’s location in my liver, my oncologist decided to remove the whole tumor surgically rather than just taking a sample for a biopsy. After testing of a sample of the tumor, I was diagnosed with cholangiocarcinoma. I was shocked; I had convinced myself that it can’t be cancer.

When I was first diagnosed, I knew nothing about cholangiocarcinoma. I relied on my oncologist for a lot of information, and I tried doing some of my own research. It was hard; there was a lot of information to sift through, and some of it was really scary.

Fortunately, they had sent a sample of my tumor for molecular testing. I learned a lot about molecular profiling from attending various conferences and webinars held by the Cholangiocarcinoma Foundation. The molecular profiling showed that my tumor had a type of mutation called an FGFR2 fusion. The information from molecular profiling has been an important part in helping to determine my care plan moving forward.

My advice to other people who have cholangiocarcinoma considering molecular testing is that knowledge is power. Learning more about your cancer may cause some anxiety, but it can be really empowering too.


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MAT-ONC-00220  09/23