Fibrolamellar hepatocellular carcinoma (HCC) tumors are so rare, that they are typically found by surprise.  Because Fibrolamellar HCC is so rare, making up 1% or less of all liver cancers there is very little data on treatment.  While HCCs, by and large, are an adult cancer that tend to occur in older patients who have underlying liver diseases Dr. Alexis Leal says "fibrolamellar HCC, in stark contrast, is a disease of children, adolescents, and young adults who don't have liver disease." According to Dr. Leal symptoms of fibrolamellar HCC Include:  Pain or a feeling of fullness in the abdomen, shoulder, or back, specifically in the upper right abdomen Nausea and vomiting Loss of appetite Unexplained weight loss Malaise, having less energy or generally feeling unwell Jaundice A palpable mass in the upper abdomen

The high rate of recurrence associated with fibrolamellar HCC following immunotherapy and chemotherapy treatments means that patients must be closely monitored for at least five years.  This includes scans and physical exams that will allow physicians to watch for any sign of the cancer returning. 

“I’ve taken care of so many patients, and I think that that kind of good attitude goes a long way.  There’s something to be said for having a positive outlook and rolling with the ups and the downs that can come with treatment. I’ve seen a number of patients who have that attitude, and I do feel like it tends to have a positive impact on their treatment and on those around them.” says Dr. Leal.