Understanding Liver Cancer in Young Adults: Causes and Prevalence

Liver cancer primarily affects older adults. People under 45 years old make up about 3.1% of all people with liver cancer. But a rare type of liver cancer called FLC is more common in adults under 40 years old.

FLC typically occurs in people whose livers are otherwise healthy. This makes it distinct from other types of liver cancer, which generally affect people whose livers have been damaged by viruses or alcohol.

FLC is very rare. Although there’s limited data on this type of cancer, it’s estimated to make up between 1% and 5% of all cases of liver cancer and to occur in about 1 in 5 million people in the United States. Rates are higher in Mexico, where FLC accounts for about 5.8% of all people with liver cancer.

The median age for receiving a diagnosis of FLC is 25 years old. By comparison, the median age for receiving a diagnosis for any type of liver cancer is 66 years old. You can see a breakdown of people with liver cancer by age in the chart below.

The causes of FLC aren’t completely understood. It’s thought that a combination of genetic and environmental factors is likely to be involved.

Researchers think that abnormalities on the DnaJ heat shock protein family member B1 (DNAJB1) and protein kinase cathelicidin antimicrobial peptide-activated catalytic subunit alpha (PRKACA) genes might play a role since these genes fuse together in almost all people with FLC.

But researchers don’t know what causes these genes to fuse or why the fusion leads to FLC.

Unlike other types of liver cancer, there don’t appear to be other risk factors for FLC. Risk factors for all other types of liver cancer, such as smoking, heavy alcohol use, obesity, and certain viruses, don’t appear to be risk factors for FLC. While it’s possible for young adults to get liver cancer that’s not FLC, it’s extremely rare.

There are often no symptoms in the early stages of FLC. Most people with FLC are very healthy and might not notice symptoms for years.

When symptoms do occur, they can be easy to mistake for the symptoms of other less serious conditions. But this is only the case when FLC spreads slowly. For some people, FLC spreads quickly and causes very noticeable symptoms within weeks or months.

When symptoms of FLC do develop, they can include:

• unintentional weight loss
• loss of appetite
• stomach pain
• stomach swelling
• back pain
• fever
• night sweats
• nausea
• vomiting
• jaundice
• liver swelling
• a general feeling of being unwell

Contact a doctor or healthcare professional if you’re experiencing any of these symptoms, especially if you’ve been experiencing them for more than 1 or 2 weeks.

FLC and liver cancer in young adults are rare, and it’s very likely that your symptoms are being caused by another condition. But like most types of cancer, FLC is most treatable when it’s diagnosed early. It’s always a good idea to be safe and make sure you know what’s causing your symptoms.

The first step to receiving a liver cancer diagnosis is a medical appointment. A doctor will go over your symptoms, your medical history, and any family medical history of cancer. If the doctor thinks you might have cancer, they’ll recommend testing. This might include:

• Imaging tests: You might have imaging tests such as a CT scan, ultrasound, and MRI of your liver. Doctors use these tests to look for a tumor and to check its size and location and whether it has spread.
• Blood work: There isn’t a single blood test that can confirm a diagnosis of liver cancer. But you might have blood work done to rule out other conditions that could be causing your symptoms, including other types of cancer.
• Biopsy: A biopsy can confirm if your tumor is FLC or another type of liver cancer. During a biopsy, a doctor will remove a small sample of your tumor with a needle. The sample will be tested for cancer cells in a lab.
• Fluorescent in situ hybridization (FISH): A FISH test is a test done on the tissue sample taken during the biopsy. It looks for abnormal DNAJB1-PRKACA fusion that’s common in FLC.

The primary treatment for liver cancer is surgery to remove the tumor. Depending on the size and location of your tumor, this might involve removing part of your liver along with the tumor or removing your entire liver and performing an organ transplant. In either case, successful surgery can completely remove your liver cancer.

Since FLC and any liver cancer in young adults are rare, there aren’t standard treatment protocols. A doctor will work out a plan that addresses your specific cancer and health. Removing your tumor will always be the focus, but broader treatments are available.

If surgery isn’t possible or if the cancer has spread beyond your liver, options include:

• Chemotherapy: Chemotherapy uses strong medications to kill cancer cells.
• Embolization therapy: This is a treatment that cuts off the blood supply to the specific part of your liver where the tumor is located. Without a blood supply, the tumor dies.

Liver cancer in young adults is rare. It’s difficult to get accurate statistics when the data is so limited. Additionally, treatments aren’t standardized, and approaches change based on individual people.

Individual factors appear to dramatically impact the outlook for young adults with liver cancer. For example, the overall 5-year survival rates for people with FLC range between 7% and 40%. But the average survival without tumor removal is 12 months, and the average survival time with complete tumor removal is 9 years.

Keep in mind that these numbers also use past data. New treatments are being developed and used all the time, and it’s very likely that current survival rates are higher.

Your individual outlook will depend on your specific case, overall health, stage when you receive the diagnosis, and response to treatment. And new developments for FLC in young adults are promising.

Does fibrolamellar (FLC) run in families?

There isn’t enough data about FLC to know if it runs in families. As of right now, researchers believe there’s a genetic abnormality linked to FLC, but there’s no evidence to suggest this mutation is inherited.

Are there any preventive measures you can take to avoid getting liver cancer?

FLC isn’t linked to any of the risk factors for other types of liver cancer. There doesn’t appear to be a way to lower your chances of developing it. But you can lower your risk of other types of liver cancer by taking steps such as:

• quit smoking
• keep up a healthy weight
• follow a healthy diet
• stay physically active
• only drink alcohol in moderation

Should you have regular screening for liver cancer if you’re at high risk?

There are regular screenings you can have for liver cancer. Talk with a doctor if you’re at high risk or are concerned about your risk. They can help you assess your risk and determine how often screening is appropriate.

Are there any new and promising treatments for liver cancer?

There have been multiple advances in liver cancer treatment in the past few years.

In 2020, The United States Food and Drug Administration approved two new medications to help treat liver cancer that has spread beyond your liver. These medications, a type of targeted therapy, can help treat liver cancer that was previously very difficult to treat effectively.

Additionally, techniques such as ablation, which kills tumors with heat or freezing, are allowing tumor removal for people who are unable to have surgery.

Liver cancer is rare in people under 45 years old. Most young adults with liver cancer have a rare subtype of liver cancer called FLC.

FLC is distinct from other types of liver cancer because it occurs in young people who otherwise have healthy livers. It isn’t linked to alcohol, hepatitis, fatty liver disease, or any of the risk factors for other types of liver cancer.

It’s thought that FLC is caused by a chromosomal abnormality, but the mechanisms aren’t fully understood.

Since FLC is rare, there isn’t a standard treatment, but surgery to remove the tumor is the primary option. Other treatments include chemotherapy and embolization.