Welcome to the First edition of FibroFighters Quarterly Newsletter. My name is Dr. Paul Kent, but you can call me Paul. You can read about my background here. You might remember being asked about the “Right Upper Quadrant” or seeing RUQ in your healthcare provider’s notes: this is where the liver lives in your abdomen. I am going to use this as a place to respond to Frequently Asked Questions and also to highlight work in Fibrolamellar Carcinoma Medicine. You can submit questions by email at PaulKentMD@fibrofighters.org or ContactUs@fibrofighters.org
For this first issue of our Quarterly Newsletter, I want to introduce to you the FibroFighters International FLC Tumor Board. A traditional Tumor Board is a meeting of physicians from a given institution that confidentially discuss a new cancer diagnosis. A Tumor Boards typically discuss all cancer types and is a requirement at most cancer centers. You likely had your, or your child’s case, discussed at your local institution’s tumor board after diagnosis or relapse.
The FibroFighters International Fibrolamellar Tumor Board is the first of its kind to discuss ONLY FLC cases (not mixed in with Hepatocellular carcinoma or other unrelated cancers), and to have dedicated FLC experts from all disciplines from around the country and the world. The International Tumor Board invites your healthcare providers to join and discuss your case. The format of our International Tumor Board gives the patient immediate access to a diversity of opinions and options, not confined to one institution’s or opinions or experience, which may be limited given the rarity of FLC.
Since August 2022, the International Fibrolamellar Tumor Board has discussed 92 total patients, including 73 patients from 27 states in the USA and 8 countries around the world. Patient cases discussed included new diagnosis, relapses, progressive disease, and ongoing care. The International Tumor Board generally meets on Zoom, allowing professionals from anywhere to join. Importantly, in a majority of cases discussed, the primary care team agreed and implemented the consensus recommendations of the Tumor Board. In addition, the Tumor Board has successfully appealed insurance decisions on 10 occasions.
If you or your doctor would like you case to be discussed at the FLC tumor board, please contact FibroFighters through our website or email ContactUs@fibrofighters.org or PaulKentMD@fibrofighters.org