“A Wild Ride Full of Surprises”: Tori’s Journey with Fibrolamellar Hepatocellular Carcinoma

Before I was diagnosed with a rare cancer, I was already no stranger to surprises. Nobody expects their cancer story to be part of a pandemic story and a love story, but for me, that’s how things shook out.

My story starts a few years before my diagnosis in 2021. At the beginning of 2019, my husband and I moved so I could take my dream job at a Silicon Valley startup. These massive shifts were too much for my strained marriage. By that summer I lived alone, stopping by the courthouse one cloudy day to file for divorce. Amid my busy startup life I tried to fill my days with as much sunshine as I could. I didn’t know it yet, but by the end of 2019, I had met someone who would go on to help save my life.

The COVID-19 pandemic cast a deep shadow over the peace I was working to build. Lockdowns loomed. My sunny California apartment was suddenly dark and lonely. I packed three huge suitcases, and desperate not to be alone during the “two weeks to slow the curve,” I flew out to live with my long-distance partner, Anthony, a few months after we started dating. It was supposed to be temporary. We all know how that turned out.

In February 2021, we were sitting on the couch on a lazy Sunday night, celebrating birthdays with dinner and drinks. I suddenly felt an uncomfortable pressure in my right side. This discomfort grew to throbbing pain that spread up to my shoulder. Anthony convinced me to go to the ER. By the time we got there, I could barely breathe without shooting pains up my right side.

Ultrasound expected to find gallstones given the type of pain I was experiencing, but instead they found a lesion on my liver. I then got a CT scan with the doctors expecting to find a benign lesion common in women my age, but instead we found suspicious characteristics in the tumor, like central calcification and diffusion restriction. I got an MRI a few days later that surfaced even more questions. Finally, I got a liver biopsy to know what was going on with certainty.

My 32nd birthday came and went with the hum of nervous unknowns droning in the background. The biopsy results showed up on my phone on a late March workday. I was preparing a presentation when I got the notification. I figured that if doctors were releasing the results “early,” it had to be good, right? I opened it. That’s when I read:

“FINAL DIAGNOSIS: Liver mass, biopsy: Hepatocellular carcinoma.”

At first, I closed the app and convinced myself I had read it incorrectly. Carcinoma? Nah. Stunned, I opened it again a moment later. The same words stared back up at me. I yelled, shaking.

Anthony rushed to my side. “I got my biopsy results;” I told him, starting to sob, “it’s cancer.” I showed him the phone. He hugged me tight and told me over and over as I cried that it was going to be okay, that I was going to be all right, that we are going to fight this and beat it, that we were going to be all right. And all I could say between sobs was, “What the ^&#%?”

I was young, I had no risk factors, and I felt normal– at least as normal as I could in the middle of a busy job and a pandemic. How could this be happening?

The key to understanding my situation was in a rare gene fusion. In the days that followed, I met with my oncologist to learn more about my condition and to plan my surgery. Based on additional scans and blood test results, it became apparent that my liver cancer was not typical. I didn’t have any of the markers elevated in primary liver cancers, such as high alpha-fetoprotein.

My oncologist had my biopsy results tested for gene mutations that confirmed a rare type of cancer: fibrolamellar hepatocellular carcinoma, or FLHCC.

If I was ever “one in five million” I would have hoped that it would be because I was winning the lottery, but alas. However, in a weird way, I was ridiculously lucky. Researching the disease online painted a grim picture– a majority of those with FLHCC don’t make it five years, as it’s usually diagnosed late. I had that random pain that sent me to the ER, giving me a much earlier diagnosis. Because of this, surgery became a great option with a good prognosis. If we could get clean margins and didn’t find spread to my lymph nodes, I’d be looking at remission.

In late April, Anthony took me to the surgery center. I’d be getting a liver resection and my gallbladder and lymph nodes removed and staying a few days for recovery. I remember all the thoughts floating around my head as we stood inside the hospital doors. Anthony and I had not been together long, yet here he was, supporting me the entire way. I felt that I had dropped into his life with promises of fun travel and good times and instead delivered this horrible package of complicated medical situations. I would have understood if he decided that it was too much.

We exchanged warm hugs, and I turned and walked through the doors to the surgery wing. I was terrified, but I made up my mind in that moment to move forward unflinchingly. Anthony had already lost loved ones to cancer in his life, and if I could help it, I would not be on that list. I would go through anything to prevent that and to continue bringing joy into his life in any way I could. Surgery became my first big step down that path.

The liver resection and the three month recovery that followed was the hardest thing I have done in my life. Anthony couldn’t visit due to COVID-19 protocol, so I was mostly alone. The nurses and doctors in the hospital were wonderful and helped offset how awful I felt. After being discharged the first time, I had a postoperative bile leak that felt like a bear mauling me from the inside out– my new “ten out of ten” on the pain scale. I was readmitted and had to have several procedures to stop the leak and drain the fluid in my abdomen. At home, I needed help doing everything from getting out of bed to operating the drain on my side to using the bathroom.

Anthony was there the whole time, even when he couldn’t visit in person. He became an expert at my drain maintenance and at keeping me comfortable. He kept me on track with my appointments, my medications, and all the post-operation instructions.

I got back to work in July , and a few months later, he proposed. In addition to our compatibility in personality, I could not believe the amount of love and support he had shown through his actions. Even knowing there wasn’t a “five year” rule with FLHCC remission and that I’d need scans for the rest of my life, even knowing I might have complications and need support, even knowing about all the other things going on, he was still signing up for the wild ride.

I said yes, and we were married a few months later. We’re still married today, almost four years into my NED status. I still get scans once every six months to monitor for recurrence. I’m still learning to live with my scars and some of the random pain they cause. But mostly, I’m learning to live every day as if it’s a gift. This story could have ended much differently.

Because I decided to leave California during COVID-19, because I had a drink with my partner one Sunday night, because I listened to his suggestion to go to the ER, because I had his undying support through the whole journey that followed, because I had wonderful and talented medical staff along the way– for all these reasons, I get to wake up again each morning with my entirely new perspective on life. Although Anthony and I have had many surprises together, I think our favorite surprise is finding each other through the whole mess. I’m so glad to still be here with him. To me, that’s been worth every part of the journey.

fibrolamellar hepatocellular carcinoma FLHCC liver cancer patient stories rare cancer

Last modified: February 5, 2025