October is liver cancer awareness month, a disease that is the second leading cause of cancer-related deaths globally.
A glance at Adrienne Wilson’s online journal provides some insight into the mind of a teenager wise beyond her years. When Wilson was fifteen, she was accompanied by her sister Andrea to the hospital after experiencing intense abdominal pain. “Watch it be cancer,” Adrienne jokingly said to her sister as they awaited her imaging results, which would change the direction of their lives. Adrienne was diagnosed with Stage IV liver cancer. On the precipice of a journey that would last 147 days, she refused to let her diagnosis define her. In her journal, Adrienne writes:
“I will fight this, pills and all, and it will not kill me.”
“I will be drop dead gorgeous, even if I don’t have hair.”
“I will help people who have to go through this. I will be amazing and impossible to avoid.”
While those 147 days were filled with pain from chemotherapy treatment and blood transfusions, they were also filled with self-discovery, a blue wig, and an afternoon with Dave Navarro—a band member of Jane’s Addiction. The story of Adrienne Wilson’s journey lives on through Blue Faery: The Adrienne Wilson Liver Cancer Association, an organization founded by her sister Andrea. October is liver cancer awareness month, and through research, education, and advocacy, Blue Faery aims to prevent, treat, and cure primary liver cancer—specifically hepatocellular carcinoma, which accounts for about 75 percent of primary liver cancer. “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,” Andrea Wilson Woods said.
According to Wilson Woods, the complexity of hepatocellular carcinoma makes it challenging to treat. "It is a disease within a disease making it extremely important that community oncologists understand the complexity of hepatocellular carcinoma so they can better serve their patients," she said. For patients with liver cancer and their loved ones, Wilson Woods urges them to seek a second opinion. "This option is easier now with telehealth and often providers will give a second opinion at no charge, especially for virtual visits. Also, look at clinical trials, they need to become a first option, not a last resort," Wilson Woods said.
Liver cancer is the second leading cause of cancer-related death globally, responsible for more than 700,000 deaths worldwide each year. In the United States, incidence rates of liver cancer in young adults have started to decline; however, the incidence of liver cancer in adults has more than tripled over the last 40 years. Nationally, death rates from liver cancer have increased by about one percent each year for women and have stabilized for men.
In the continued fight against liver cancer, ACCC partnered closely with Blue Faery in its former education program that was dedicated to supporting the multidisciplinary care of patients with hepatocellular carcinoma. "It is critical that when someone hears those awful words "you have cancer" that they are connected to the best possible resources," Wilson Woods said. Featured resources developed as part of this program include an environmental scan, discussing a 2018 ACCC survey, to understand the perspectives and experiences of the multidisciplinary cancer team, as well as an informed report on effective practices in care coordination for multidisciplinary hepatocellular carcinoma care, which offers real-world examples from three ACCC member programs.
Further, ACCC will launch another education program dedicated to this space, titled “Less Common Cancer in the Community–Hepatocellular Carcinoma Visiting Experts Series.” The overall goal of this program is to feature a series of visiting experts’ workshops that will encompass the clinical management of patients diagnosed with and treated for hepatocellular carcinoma in the community setting and set up the multidisciplinary team for success in care delivery within their cancer program or practice. ACCC’s focus on the multidisciplinary cancer care team will serve to:
Under the guidance of a multidisciplinary steering committee, this education program will identify and provide guidance on important issues related to the optimal care coordination and identification of patients with hepatocellular carcinoma. The resulting resources will support practice and process improvement options for community-based programs and practices that care for patients with the disease.
On November 10, ACCC is hosting a virtual, interactive session to discuss how to best care for patients with hepatocellular carcinoma, while analyzing ways to improve care coordination through the development of programs dedicated to the disease. Each participating cancer program or practice could receive an honorarium of $1,000 for their full participation in the discussion and a brief 3-month follow-up. Individuals can indicate interest in participating by completing this interest form.
The Less Common Cancer in the Community–Hepatocellular Carcinoma Visiting Experts Series is supported by Bristol Myers Squibb and Eisai Co., Ltd.
