Rare Disease Report

Ghassan Abou-Alfa, MD Discusses Fibrolamellar Cancer

NOVEMBER 09, 2017
Ghassan Abou-Alfa, MD
Ghassan Abou-Alfa, MD, is a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City. He specializes in gastrointestinal (GI) cancers, such as cancers of the liver and bile duct.

His team has recently partnered with researchers from the University of California at San Francisco and Harvard University on more than one study to evaluate different drugs in patients with fibrolamellar carcinoma. At the Fibrolamellar Cancer Foundation Summit, he sat down with Rare Disease Report to discuss the pathophysiology and diagnosis of fibrolamellar cancer, and also what breakthroughs people can expect to see from the space in the future.

Abou-Alfa: Fibrolamellar cancer is a very rare cancer, nonetheless, of course, when it affects a young person – because that’s mainly where it happens – there’s a lot of concern and understanding about the need for medical care. If anything, historically, we thought of fibrolamellar carcinoma as being a variant of the primary liver cancers that is one of the most common cancers worldwide, simply because it’s a cancer that starts in the liver, so why not think about it as a version or a variant of the primary liver cancer? Nowadays, however, we do understand that fibrolamellar carcinoma is an entity by itself, or a different disease. If anything, it can be described as happening in even younger patients, and maybe more girls than boys. The best that we have to say is that surgery has been the key element that, historically, has helped these patients. Unfortunately, and sadly, the cancer either starts to become nonsurgical or the symptoms can come back and then it can become nonsurgical.

Diagnosis is caught, more likely than not, but not necessarily always, by either very subtle symptoms or at least by a surprise finding either by ultrasound or cat scan that was happening for another reason, but abdominal pain can be enough to really initiate an evaluation that leads to the finding of the primary hepatocellular carcinoma that is the variant of fibrolamellar carcinoma.

Abou-Alfa: There’s no doubt that there’s a certain number of patients who will present with the cancer, fibrolamellar cancer, who can have it removed surgically and, in other words, look for the potential for cure. There’s no question that the right thing to do is to look for surgical intervention. On the other hand, though, because of the limited, or almost nonexistent, other therapies for fibrolamellar carcinoma, it’s understandable that patients might come back more than once for surgery, or even sometimes repeat surgeries or have surgeries that are extensive beyond what is done for more classic cancers. This is a point that’s really beyond any of our understanding, however, things, I expect, will be evolving and moving forward in regard to what we can hopefully try to help patients with fibrolamellar carcinoma, more than simply surgical intervention.

Fibrolamellar cancer is a relatively rare cancer, and, as such, the interest to support research for fibrolamellar cancer is limited. It’s understandable that interest in trying to invest in a clinical drug or a certain drug for fibrolamellar carcinoma might not necessarily be a priority from the industry standpoint. Nonetheless, to give credit, the industry has been rather open and supportive on more than one occasion and, if anything, the effort to even build a study with a pharmaceutical industry sponsor is becoming a reality.


For more from the Fibrolamellar Cancer Foundation, visit the organization’s website: fibrofoundation.org.

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