This October is Liver Cancer Awareness Month. Fibrolamellar is a type of liver cancer, but it is very different from Hepatocellular Carcinoma in many important ways. It is critically important for doctors to understand and appreciate the differences and distinctions between these two diseases. Otherwise, doctors are not treating the right illness. Patients with fibrolamellar carcinoma (FLC) have long suffered and even died, and continued to, from being treated like they have hepatocellular carcinoma (HCC). It’s been suspected since the 1950’s that FLC was a different disease, and then proven to be a different, unrelated disease, in 2014 with the discovery of the DNAJB1-PRKACA fusion that is (99%) unique to FLC. Central to the mission of FibroFighters is to educate the medical community and patient community about this rare disease and its specific treatments and to find and help those being incorrectly treated like HCC.
Here I am going to outline some important distinctions between Fibrolamellar Carcinoma (FLC) and Hepatocellular Carcinoma (HCC). Understanding these differences is critical for finding the right care and treatment for each unique patient.
The tables below highlight some important distinctions between FLC and HCC. The most obvious difference is the demographic affected by these cancers. FLC is mostly seen in young males and females who are otherwise healthy, it is also extremely rare, estimated to occur in 1 in 5 million people. Comparatively, HCC is the most common type of liver cancer and 4th most common cancer in the world. HCC is seen mostly in men over the age of 65, often with hepatis, alcoholism, or other illnesses. Given this, it makes sense that treatment approaches need be different. This is also cause for hope! ALL stages of disease can be treated and there is potential for positive outcomes for FLC.
I also want to highlight a couple key points.
- Knowledge and expertise in HCC does NOT translate in to experience or knowledge of FLC. It is so important to ENGAGE WITH EXPERTS IN FLC.
- Multi-disciplinary care involving oncology, surgical, interventional radiology, radiation oncology, and patient advocates with experience of living with FLC is necessary.
- Nothing is 100% in cancer. There are exceptions to the outlines below. That is why treatment should be multi-disciplinary and personalized to each individual patient.
You can download all of these informational slides using the link below.