Apr 29, 2003 - 8:31 pm
My daughter was diagnosed with fibrolamellar hepatocellular carcinoma in August, 2000, when she was 19 years old. She had a liver transplant in October, 2000, and did fine until a metastacies of this same cancer was found on her lung in Sept of 2001. She had a lobectomy in Feb of 2002. She had a grapefruit sized tumor removed from her pelvis in Feb of 2003. I am looking for others who have experience with this kind of liver cancer. It is rare and we have not been very successful in finding doctors who know about this cancer, let alone how to treat it. The basic treatment has been to wait for a tumor to occur, then surgically remove it. We would like to be more proactive and any information to help us do this would be so greatly appreciated.