Laura is a fibrolamellar survivor and Patient Advocate with the FibroFighters Foundation.
I was diagnosed with Fibrolamellar Carcinoma in September 2019. After an initial resection, I was told things looked good and no treatment was needed, but scans were needed every three months. Things looked good at my 3 month, 6 month, 9 month, and year scans. I thought I was in the clear.
Then, on that year and three month scan of my abdomen, it was revealed there was a recurrence. I was terrified, lost, and didn’t know what to do. I desperately wanted someone to talk to, but I didn’t know anyone else with cancer, let alone fibrolamellar. I started scouring the internet and finally found others who shared my diagnosis through a Facebook group. I posted about my experience, and someone asked – did they scan your chest? My medical team at the time hadn’t ordered a chest scan so I asked for one, and sure enough, the chest scan revealed metastasis to the lung. That question was critical for my care.
I started messaging and talking with more people, both patients and caregivers. It was so empowering to connect with others who knew what it was like; I didn’t need to explain what fibrolamellar was, or how scared I felt. One of those people was a fellow patient named Corey. We discovered we have remarkably similar cancer experiences and were on the same treatment. Despite living in different states, we forged a friendship and found comfort and support in each other. We wondered how many other people were out there who were seeking connection with other patients, and the Virtual Patient Zooms were born!
Monthly patient meet ups are hosted on Zoom and are open to anyone who has received a diagnosis of FLC in their lifetime. These meet ups are meant as a safe space to talk with others who have been through a similar experience. And it’s not just about FLC! Discussion at virtual meet ups are led by the group, sometimes we talk about treatment or side effects, sometimes we talk about completely different topics: video games we like to play, food we like to eat, places we want to visit.
If you are interested in connecting with others who know what it’s like, join us! The first Monday of each month at 5pm Pacific, 6pm Mountain, 7pm Central, 8pm Eastern. The next meeting will be Monday September 9th. Follow us on social media for the latest updates. We hope to see you there!