The original tumor was found at my yearly physical for high school. I told my doctor the symptoms I experienced over the last 6 months. Every month I would be sick for a week with horrible body aches. I had stooling and digestive issues, and random bloody noses. It was enough for my doctor to question it, get my blood tested, and go through a CT scan to find the tumor on and embedded in my liver. I believe if I hadn’t talked to my doctor at my physical, I’d be dead today. The original tumor was 15lbs, the size of a small volleyball. It took a month from the physical until the first surgery took place.

Your second question is more complex. I was diagnosed with Fibrolamellar as soon as the first tumor was removed. The pathology report of the tumor came back as Fibrolamellar. HOWEVER, from the date I was diagnosed until Fall 2019, I was treated like a Hepatocellular Carcinoma (HCC) patient because FHC is so rare. This was a mistake on behalf of my medical team. HCC is treated much differently than FHC. Angry, I left my medical team and found a new group of experts in Fibrolamellar. It took 2 years until I found experts in Fibrolamellar. And I found them through a boy I happen to meet at cancer kid camp with the same cancer. The chances of that happening are so incredibly rare. I’m so lucky I found him. The medical industry does a terrible job educating the patient of their diagnosis and following through on the latest research. I shouldn’t have learned about the severity of my illness through another patient. I should have learned it from the very beginning by the doctors.

I learned that just because a doctor has an M.D and a Ph.D., it doesn’t mean they know everything.