Ben

Diagnosed Feb 2019, age 19

I’m 20 years old and live in Wisconsin with my parents Jennifer & Daniel, my little sister, Eliana & our dog Lily. My older brother, Ethan & his wife & baby live nearby.

I was diagnosed with Fibrolamellar Carcinoma in January of 2018, six weeks after my 19th birthday. I was a freshman at the University of Wisconsin in Madison and in November of 2017 went to the ER at the University Medical Center with abdominal pain. They did a CT to look for appendicitis and instead found a mass in my liver. I was told to have follow up care with my primary care physician at home over winter break.

The follow up process took time, and the final diagnosis was given to us in January of 2018, the day before I was supposed to return to Madison for my second semester of freshman year. We cleaned out my dorm room & I withdrew from the university on medical deferment to have surgery about a week later.

My first surgery took 14.5 hours and Dr. Travis Smith removed 70% of my liver at that time, as well as removing my gallbladder, patching my portal vein & rebuilding a bile duct for me. The pathology report confirmed that the tumor was fibrolamellar cancer and that there was a very small amount of the cancer in one of my lymph nodes.

I started chemotherapy with Sorafenib in March of 2018 which I was on until January 2019, when we were told that they suspected that the cancer was returning in my liver. During my workup for a possible tumor ablation it was discovered that I had a tumor in my chest that had been growing since prior to my first surgery. The ablation was therefore canceled.

I was then seen and treated at Rush University Medical Center in Chicago by Dr. Kent, Dr. Hertl, Dr. Schadde & Dr. Tasse starting in February of 2019. I had my second surgery with them in February to remove the tumor in my chest and the small recurrent tumors in my liver. I then had an Interventional Radiology Procedure in July to embolize part of my spleen & attempt to open my blocked portal vein.

I am currently getting treated with Opdivo, Interferon & Capcitepine at our local Pediatric Oncology Clinic with Dr. Orozco as well as continued medical care from Dr. Smith & Dr. Azene at Gundersen Health System in La Crosse, Wisconsin. My last scans in July 2019 found no evidence of new disease!

I will be taking a class this fall at UW-La Crosse to further my education while they continue to fine tune my chemotherapy & immunotherapy.