Hello,

I have a friend who is 20 years old and was diagnosed with fibrolamellar HCC in 2022 when she was 18 and a 10cm tumour was found on her liver. This was removed surgically with clean margins. Ever since she has been having scans every 3 months to check for recurrence. They noted nodules on her lungs and inflamed lymph nodes in her chest, lungs, and esophagus so she had a bronchoscopy and biopsy which confirmed recurrence and spread of the fibrolamellar, her liver still looks clean though. The doctor has been very vague and has not provided her with clear information about treatment options, chance of success or prognosis etc. He said that because the cancer is in so many different places, surgery is not an option and so she is due to start chemo soon. He has initially proposed a combination of fluorouracil (5FU) and peginterferon alfa 2a (Pegasys).

We are just trying to find out as much information as we possibly can but obviously, because it is such a rare cancer this is quite difficult and a lot of the information is from America. I wanted to ask if anyone has experience with this treatment regime or with fibrolamellar which has metastasized or if people know any UK-based fibrolamellar specialists.

Thank you. Becca