Diagnosed in 2009 at age 45 years old
January 26, 2009 I was in excruciating stomach pain. I couldn’t lie down or stand up, it was so bad. I called my wife at work to tell her, something I have never done, and when she came home, thinking I had the flu or a stomach virus, got the thermometer. As she approached me she felt the heat and it turned out I had a 104 degree fever. We immediately went to the local ER and they did a CT scan and noticed a mass on my liver. I also had an infection in my bile duct which was causing the fever. I was admitted and after a liver biopsy I was told I had cancer. St. Luke’s wanted me to immediately go to Memorial Sloan Kettering in Manhattan and see Dr. Yuman Fong. They specifically gave his name. The only sign I had prior to all this was awful heartburn and a fever about 6 weeks before. I never had heartburn and now I think it was all related to the tumor.
I spent 7 days at St. Luke’s, trying to break the fever, and was at Sloan a few days after that for our first visit. We really had no idea what was going on but after meeting with Dr. Fong, he wanted the tumor our right away. Since I had no cirrhosis or hepatitis I was a candidate for surgery. A week later, Dr. Fong and his team removed a 17cm. tumor, more than three quarters of my liver, three lymph nodes and my gall bladder. He also told me I had Fibrolamellar Carcinoma. I was told at that time it was primarily a teen and young adult cancer and I was one of the oldest people diagnosed (45 at the time). My wife likes to say it’s because I act like a child though!
He believed that no chemotherapy was needed as he knew there was a very poor outcome and he felt confident he got it all.
A few months went by, I was feeling good and much stronger and I got one clean scan. But then at my second scan after the original surgery they found a tumor near my colon. At first they were not sure if it was colon cancer or it had metastasized. Another biopsy and colonoscopy showed it was fibrolamellar. It looked like it was all still operable, which we know is a big key to this cancer. So, almost a year to the day after the first surgery, I had a colon surgeon, Dr. Fong and a urology specialist operate to remove the 8cm. tumor. I was told I could also lose my kidney but I was lucky and only lost about 18” of my colon and of course the tumor.
I went home hoping that was it! But alas, a few months later, the fibrolamellar reared its ugly head again. This time a tumor had formed above the original first, right next to my heart. So on September 1, 2010, a heart surgeon and Dr. Fong performed my third surgery and removed another 6cm. tumor.
I told my wife that the tumors keep getting smaller and the hospital stays keep getting shorter each surgery, so I feel I am on the right track. My next several scans from December 2010-August 2014 came up clean. But unfortunately, along comes the January 2015 scan and the monster had returned. This time near the diaphragm. The tumor was removed at Sloan and immediately walked across the street to the Rockefeller University to start immediate testing. I also have since periodically visited Rockefeller University for sample blood donations to help with research.
I should also note our beloved Dr. Fong left to go to the City of Hope Cancer Center in San Francisco and my new surgeon is Dr. Peter Allen since mid 2014. He has proved to be a great fit!
I feel good right now except for a hernia that has given me problems since the first surgery. I should also note that since my cancer has remained operable and after much consideration, research, consultation and because of my situation, I have always opted against insurance chemotherapy.
August 2015-August 2018, clean scans!!