Supporting the 3rd leading cause of cancer-related death

Liver cancer is the third leading cause of cancer-related death worldwide, and the incidence of primary liver cancer in the United States has tripled over the past four decades. While chronic viral hepatitis is the primary route to liver cancer in the United States, non-infectious causes such as morbid obesity, type 2 diabetes, non-alcoholic fatty liver disease (NAFLD), and non-infectious steatohepatitis associated alcoholism (NASH) increased rapidly. We will describe each of these pathways, starting with viral hepatitis (HCV and HBV) and alcoholic cirrhosis.

There is a morbid saying that cancer eventually affects us all, unless something else affects us first.

While some cancers currently have no accessible prevention, some can be effectively prevented. Hepatocellular carcinoma (HCC) is one of those that can be prevented, but once HCC is established and symptomatic, survival rates drop sharply. While liver cancer is the 8and location of cancer site by prevalence (Figure 1), this is the 3rd leading cause of death (Figure 2). HCC has a high mortality profile with a median survival after diagnosis of 6-20 months, and in the United States it has a 5-year survival rate of only 10% (Golabi, et al., 2017)

Figure 1. Top 10 cancer sites by case (Sung et al, 2021)

Top 10 cancer sites by death

Figure 2. Top 10 cancer sites by death (Sung et al, 2021)

The COVID-19 pandemic has rightly occupied the minds and efforts of nearly everyone in healthcare for the past two years, but HCC has not gone away and continues to cause daily damage. . HCC was on 4and leading cause of cancer-related death in 2019 (Yang et al., 2019), and has been steadily increasing – it has tripled in the United States (Rawla, Sunkara, Muralidharan & Raj, 2018).

Although your daily chance of encountering a patient with HCC is still small, it increases year by year and there is a serious risk of missing the window of opportunity to prevent full-blown HCC.

This blog will describe how to be alert to the causes and cases of HCC, and we will provide you with tools and resources to help you identify HCC, ways to connect your patient with appropriate specialists, and help you find appropriate studies and trials for your patient.

There are four main HCC risk factors:

  1. Hepatitis B (HBV)
  2. Hepatitis C (HCV)
  3. Excessive consumption of alcohol
  4. Non-alcoholic fatty liver disease (NAFLD) resulting in non-alcoholic steatohepatitis (NASH)

How likely are you to encounter hepatocellular carcinoma in patients?

In the near future, it is unlikely that any specific patient you see will already have HCC. That’s great, but it’s also a problem because you’re less likely to recognize it immediately. For HCC, delay is the killer.

However, you are very likely to see a patient who, regardless of their primary complaint, is already on one or more of the four main HCC pathways. The picture is also skewed when race is taken into account – while the overall rate of HBV infection has declined significantly since 1991, it remains a concern for the African American population. In 2017, non-Hispanic African Americans were 1.5 times more likely to die from viral hepatitis than whites, and almost twice as likely to die from HCV. (HHS-OMH”Hepatitis and African Americans”)

Anything you can do to increase HBV vaccination rates and prevent HCV infection will help steer your patients away from the viral pathway. It is therefore important to use screening tests for HBV and HCV and to strongly encourage HBV vaccination even if patients are not in high-risk categories. Likewise, addressing alcohol use and encouraging your patients to follow guidelines will help steer them away from alcohol’s path to HCC.

the NAFLD/NASH pathway talks about lifestyle changes that are inherently healthier and worth discussing. Discussing healthy eating, limiting portion sizes, and maintaining a healthy weight with your patients can help steer them away from this path.

Patient history that should raise your index of suspicion includes past unprotected sex, use of needles, binge drinking or binge drinking, or increasing obesity. However, it is important to keep in mind that many patients who had no obvious risk factors in their history nevertheless went on to have HCC. Although atypical, HCC can be the result of maternal HBV infection or HCV transmitted to children. For an example, see “Better off bald: a life in 147 days

How to discuss staging with patients

Discussing staging with patients can be difficult, and the literature is often either aimed at clinicians or contains misleading information. Blue Faery provides clinically accurate yet understandable materials to help you describe the staging and help the patient understand where they are on the spectrum.

These materials include:

  • The HCC patient education brochures is written in plain language and intended to be read by the patient.
  • The Blue Faery and Exelixis staging discussion pad contains anatomical graphics and easy-to-understand text. Each double-sided sheet allows the doctor to add notes that his patient can use after the appointment.
  • the Liver Cancer Patient Resource Guide is a 20-page booklet containing relevant explanations and resources for HCC patients and their caregivers.

Blue Faery will send these documents free of charge to any doctor who requests them.

How to Find Hepatocellular Carcinoma Specialists, Treatment Options and Clinical Trials

Treatment of HCC is best approached with a multidisciplinary team coordinated by a primary care physician. The most effective approach will likely require the expertise of multiple healthcare professionals, including the primary care physician, and may include an oncologist with experience in HCC, gastroenterologist, hepatologist, radiologist interventionist, a radiation oncologist, a surgical oncologist and a transplant surgeon.

Where to find clinical trials specific to hepatocellular carcinoma

To find all clinical trials, the best option is, but this website can be confusing and difficult to navigate. To help physicians guide their patients to relevant trials, Blue Faery has a custom HCC clinical trial browser.

Where can patients find community support?

Patient communities are very helpful in providing patients with practical guidance for their care journey and are often a source of emotional support from people who understand the experience.

the Blue Fairy Liver Cancer Community is a free, HIPAA-compliant online community where patients and caregivers are invited to join and seek or exchange relevant information about HCC care. Members ask questions, discuss concerns and find common ground along their cancer journey. Forum moderators include Community Ambassadors who were former caregivers of HCC patients.

For individual patient support, Blue Faery has partnered with Imerman Angels, a non-profit organization that provides peer-to-peer support services to the liver cancer community. Blue Faery and Imerman Angels believe that no one should face cancer alone.


With proper screening, testing and inoculation, the viral pathway to HCC can often be interrupted. Blue Faery provides free, patient-readable and clinically accurate materials to help physicians discuss their patients’ staging, options and resources.

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