Giving a Voice to Caregivers & Patients Fighting Liver Cancer

Posted: January 12, 2018 | Word Count: 735
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Like many people, you are likely aware of the term "liver cancer" and may have some perceptions of this disease, but you may have less information than you think. Chances are, though, you have never heard of hepatocellular carcinoma (HCC), even though it’s the most common type of liver cancer and the fastest-growing cause of cancer death in the United States.1,2,3

Andrea Wilson was in a similar situation when her younger sister Adrienne was diagnosed with HCC. Once Andrea understood more about this devastating disease, she made it her mission to tell Adrienne’s story and to help others who suffer from this cancer.

More than sisters

Andrea and Adrienne shared an inseparable bond. As Adrienne’s legal guardian, Andrea was both Adrienne’s parent and sister.

“Adrienne was simply the best—my everything,” said Andrea, president and founder of Blue Faery: The Adrienne Wilson Liver Cancer Association, a leading liver cancer advocacy group. “She taught me the true meaning of unconditional love.”

One day, Adrienne felt severe pain in her right side. Six hours later, an ER doctor told Andrea and Adrienne she had tumors in her liver and lungs. Within two days, Adrienne was diagnosed with stage IV HCC.

“Our lives changed forever when we heard those eight words, ‘She has tumors in her liver and lungs,’” Andrea said. From the time she felt the pain in her side to the moment she died, Adrienne lived 147 days.

Raising awareness

According to a survey fielded by Bristol-Myers Squibb Company, in collaboration with Blue Faery, nearly half (47%) of people who care for someone with advanced stage liver cancer said they were aware of liver cancer but not very knowledgeable.4 In fact, Andrea never would have expected that Adrienne could have been at risk of developing the disease. Before that day, she believed heavy alcohol use was the only cause of this cancer.

She isn’t alone.

Many caregivers (43%) of patients with advanced stage disease did not think their loved one was at risk. One of the reasons may be that many of these people (72%), like Andrea, believed that heavy alcohol use was the most common risk factor for liver cancer.4 In reality, chronic infection with Hepatitis B virus (HBV) or Hepatitis C virus (HCV) is the most common risk factor for liver cancer.3,5

Caregivers may also face the challenge of making critical treatment decisions with their loved one. However, more than half of caregivers of people with advanced stage liver cancer surveyed (58%) admit it’s hard to understand what treatment options are available for their loved one. Nearly all of these caregivers (95%) believe more information needs to be available about different types of liver cancer treatment options and/or areas of research, and eight in 10(82%) wish they knew where to go to find this information.4

Making this type of information available became Andrea’s mission when she founded Blue Faery to support people affected by primary liver cancer, specifically HCC.

Additionally, according to the caregivers surveyed, 90% wish there were more public awareness of the seriousness of a liver cancer diagnosis, and 77% think liver cancer doesn’t get as much attention as other cancers.4

To address the needs these caregivers identified in the survey, Bristol-Myers Squibb and Blue Faery have launched LiverCancerOutlook.com, a website offering information about liver cancer and providing links to additional resources for patients and caregivers.

“Before Adrienne passed away, she said that cancer added to the story of her life. She believed it contributed to her character and sense of humor,” Andrea said. “I could not save Adrienne from liver cancer, but I have made it my mission to tell her story and to help others suffering from this devastating disease.”

For more information, or to share with a loved one, visit LiverCancerOutlook.com.

Blue Faery was compensated by Bristol-Myers Squibb for its time spent as an advisor on the Liver Cancer Outlook Survey and related content. Bristol-Myers Squibb does not endorse and is not responsible for information provided by third-party organizations.

References

1. American Cancer Society. Cancer Facts & Figures. 2017. Atlanta: American Cancer Society; 2017.

2. Islami F, Miller K, Siegel R, et al. Disparities in Liver Cancer Occurrence in the United States by Race/Ethnicity and State. Ca Cancer J Clin 2017 Jul 8;67(4):273–289.

3. Mittal S and El-Serag HB. Epidemiology of hepatocellular carcinoma: consider the population. J Clin Gastroenterol. 2013 Jul; 47 Suppl:S2-6.

4. Bristol-Myers Squibb. Bryter. U.S. Survey of Liver Cancer Caregivers. July 24, 2017 – August 31, 2017.

5. American Cancer Society. Liver Cancer Risk Factors. https://www.cancer.org/cancer/liver-cancer/causes-risks-prevention/risk-factors.html. Accessed December 18, 2017.

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