February 28 is Rare Disease Day.
Last year, we featured the story of Gail Trecosta, who described how her teenage son Matthew was bravely battling a rare form of liver cancer called fibrolamellar hepatocellular carcinoma (FHC).
This year we are featuring FHC again but with a renewed sense of urgency and purpose.
We at Liver Cancer Connect were heartbroken to learn that Matthew passed away on June 24, 2014. He was 15 years old.
Our deepest condolences and thoughts are with Matthew’s family as they try to cope with their immeasurable loss.
To honor Matthew and his family, we are highlighting FHC again this year and explaining how you can help slay this dreadful beast of a disease.
What is fibrolamellar hepatocellular carcinoma (FHC)?
FHC is a rare form of liver cancer that primarily affects teens and young adults. Unlike typical hepatocellular carcinoma (HCC), FHC is not associated with chronic liver disease, cirrhosis or a virus, and is not more prevalent in a particular ethnicity or gender.
FHC is diagnosed in approximately 200 people a year worldwide, but is often diagnosed at a late stage because of its vague symptoms and lack of diagnostic markers. Surgical removal of the tumor (resection) is the only effective treatment option. But even with surgery, FHC has a high rate of coming back (recurrence) and spreading (metastasis). Researchers are working hard to figure out why the treatments for HCC are less successful against FHC.
What do we know about FHC?
Because FHC is so rare, most clinical trials exclude patients with FHC. So, almost all questions about FHC remain unanswered:
- What environmental factors can cause FHC?
- Are there any genetic factors that lead to a predisposition?
- Who is at risk and how can it be prevented?
- How does a tumor develop and how can you keep it from spreading?
- How can it be diagnosed accurately and earlier?
- What are the best treatment options when surgical resection is not possible?
- How can it be cured?
Although FHC was first thought to be less deadly than other HCCs, researchers now believe FHC is as aggressive as HCC and people with FHC do not have significantly better 5-year survival rates than with other types of HCC.
How you can help slay the fibrolamellar beast
You can do something about this! Here’s how:
Fund cancer research or an organization that is fighting FHC. Your donation to the following organizations will support much-needed research, fund clinical trials, and help build the FHC registry.
The Tucker Davis Fibrolamellar Research Facility at The Rockefeller University maintains the Fibrolamellar Tissue Bank, which stores tissue samples and supports the development of cell lines and animal models for FHC and has an active screening program for drugs to treat FHC.
The Fibrolamellar Registry, a website run by individuals with FHC and their families, will serve as a primary source of shared information on FHC and is partnered with the Fibrolamellar Tissue Bank. A health survey database and place to share medical records are currently under development.
“Fibrolamellars of the World Unite!”: A private Facebook resource for families facing FHC.
Fibrolamellar patients can help too!
- Donate fibrolamellar tissue samples for research purposes.
- Note: Individuals may make donations at any hospital, but the Fibrolamellar Tissue Repository was created at The Tucker Davis Fibrolamellar Research Facility at The Rockefeller University to serve as a central repository.
- Donate medical information to the FHC registry. The combined information from shared medical records can be used to learn more about the causes of FHC and how to treat it. At this time, theFibrolamellar Registry is developing the capability/database to serve this purpose.
Why is research so important?
Scientists still need to learn more about the genetic changes that cause FHC, and they are getting closer to finding some of the answers. Recently a research group identified a genetic alteration that may cause tumor growth in people with FHC.
This is encouraging progress, but we still need to do so much more to find the best treatments or a cure. Currently, there is no single institution or research group collecting information on different treatments for FHC. This lack of knowledge is holding back the progress in fighting this disease. We need to build on the momentum generated by the recent discoveries and continue vital research efforts.
Editor’s Note: Join Us on the Hill!
The Hepatitis B Foundation (and its dedicated liver cancer program, Liver Cancer Connect) is a member of the Deadliest Cancers Coalition. Along with our coalition partners, we are urging Congress to safeguard funding for cancer research. Please join us on Tuesday, March 10, from 10 -11:30 am in 122 Cannon House Office Building for a congressional briefing on the importance of cancer research.