Diagnosed in 2011 at 28 years old
I had been having a workup for some side pain for about 6 months before my diagnosis on April 27th, 2011. I ended up in the ER on April 12th due to the side pain being so severe. The doctor thought for sure it was my gallbladder causing the issues but after the CT they ruled that out. He sent me home with pain meds and that was the end of that. The next day I got a call from the ER that the radiologist read it as a “spot” on my liver and I should follow up with my regular MD. The following day I had an ultrasound, which was still too general, so I had an MRI the next day, the 15th, and got the results within an hour that I had a mass in my liver. I was referred to a liver specialist. On April 21st I saw the liver specialist and he said that a biopsy was needed along with some blood work to check tumor markers. The tumor markers were negative, and I was scheduled for my biopsy the following Tuesday the 26th. My phone rang at work on the 27th and I got the news that has changed my life, that it was fibrolamellar. I was so lucky to be scheduled with the liver transplant specialist and liver surgeon the following day. Both were incredible, kind doctors. Both of them agreed that a liver resection was the way to go and I was scheduled for surgery on May 2nd. They ended up taking the tumor with 30% of my liver but all lymph nodes (7 of them) and margins were negative. The tumor was 10x9cm.
After my surgery I found out I was considered stage 2 due to the size of my tumor. I did not have any chemo or radiation following my resection. I had CT scans of my chest, abdomen, and pelvis every 6 months for the first 5 years. After my 5-year cancer free mark I switched to alternating with MRI’s of the abdomen once every 9-12 months and then a CT of the chest, abdomen and pelvis once a year. This way I was having imaging every 6 months. Once I was 10 years out I could go to yearly imaging. I chose to go with 9 months instead of a year for a few times though. I am now 11 years and 4 months out with no evidence of disease.
I am a member of the Fibrolamellar Cancer Foundation Patient & Caregiver Advisory Board.