From Healing to Hope: How One Warrior Fights Her Rare Cancer
“This wasn’t my first rodeo with cholangiocarcinoma (CCA),” explained Jan, whose 79-year-old mother passed away from the same disease in 2011. “It’s a terrible cancer, so when I got that diagnosis at 54, I was pretty angry.”
This rare cancer forms in the bile duct, a thin tube that connects the liver to the gallbladder and small intestine. The duct carries digestive fluid, or bile, that helps the body break down fats. Most people with CCA do not have any symptoms until the disease reaches an advanced stage.1
Difficult to Diagnose
Despite Jan’s existing knowledge of CCA given her mother’s diagnosis—and her background as a retired registered nurse—she didn’t notice any symptoms of the disease prior to her diagnosis. She’s not alone in that—CCA can be difficult to diagnose because of its nonspecific symptoms, such as1:
Fatigue
Anxiety
Fever
Weight Loss
Night Sweats
Abdominal Pain
According to a survey of more than 700 people living with CCA conducted by Incyte, a global biopharmaceutical company, an accurate diagnosis of CCA can take, on average, 2 years, with one-third of people initially being misdiagnosed—most commonly with gallbladder cancer.2 This explains why patients often receive a diagnosis at a late or advanced stage, when the prognosis is poor.3
Seek Out Experts
When Jan initially visited a local oncologist, he suggested she continue with her weight loss surgery and wait to start chemotherapy. “As a retired RN and someone who knew cholangiocarcinoma, I knew I couldn’t wait,” Jan explained.
Her general practitioner, therefore, got her into a center of excellence. “I immediately felt at ease,” she recalled. Just 2½ weeks later, Jan had surgery to remove a large portion of her liver and gallbladder—an option presented to her because she saw a physician who specializes in CCA.
Today, Jan stresses the importance of seeking a CCA specialist. “You need someone who’s an expert in this. It’s difficult to diagnose and has really poor outcomes.” The key? Find the right medical team as quickly as possible to avoid any time lapse of care so there’s hopefully no extra growth or metastasis.
Living With CCA
Many days, Jan feels fine. But other days, she struggles with pain, nausea, fatigue, trigger finger (where fingers lock and trigger), and hand-foot syndrome, for which she receives occupational therapy. Plus, she routinely gets check-ups, lab tests, and scans to look for signs of cancer.
The impact of CCA on patients’ daily lives manifests itself in many ways, as demonstrated in the Incyte survey2:
Half of patients noted symptoms consistent with severe depression, while the vast majority (72%) said depression symptoms make their daily lives somewhat difficult
On average, patients reported 14 quality-of-life problems, ranging from depression to abdominal pain to fatigue
Nearly all patients experienced an impact on work status, with 37% reporting considerable to great impact
Keeping strong—both mentally and physically—tops Jan’s priority list. “I think the mental part is what I didn’t anticipate,” she said, noting that she really struggled about a year ago. She called her doctor confessing her despair and asking for some counsel. “It just took one talk,” she said. “I just needed to get it out.”
Still ever the optimist, though, Jan emphasized, “I’m alive, so you have to celebrate every moment.”
Critical Support System
In addition to support from her husband, Dean, Jan frequently mentioned her tight-knit group of warriors—fellow CCA patients going through similar journeys. “I can call them anytime, and I depend on them for emotional support because they get it. I’ve met some incredible warriors. I don’t know where they get their strength, but I admire them,” she said.
Along with her husband, Jan volunteers full-time on awareness and fundraising projects; she even created an awareness movie. And, as a warrior herself, Jan provides fellowship, support, and hope to her CCA tribe.
Other support options for CCA patients include advocacy groups like the Cholangiocarcinoma Foundation (CCF), with resources for newly diagnosed patients, as well as a searchable database of specialists, mentors, access to experts, and more. People living with CCA are also encouraged to visit testmycholangio.com to find support and information about the disease, biomarker testing, and management approaches.
Message of Hope
What advice would Jan offer to someone navigating a new CCA diagnosis? Surround yourself with the right people—especially an expert medical team who will provide the specialized care, support, and community you’ll need. Jan advises patients to go the extra mile, literally. “Some CCA patients go to their regional doctors instead of making a farther drive, but I always encourage them to keep driving to see an expert. It’s worth the drive! They’re experts for a reason.”
Finally, Jan added, “Know that there’s hope. Keep fighting. And rely on the support you have.” Noting that not everyone is fortunate enough to have family to lean on for support, Jan says, “I don’t think families often get the true magnitude of CCA, but the CCA family is always there for you.”
Sources:
National Cancer Institute. Bile duct cancer (cholangiocarcinoma) treatment (PDQ®)—patient version. https://www.cancer.gov/types/liver/patient/bile-duct-treatment-pdq. Updated August 20, 2021. Accessed September 28, 2021.
Bibeau K, Bachini M, Lindley A, et al. Exploring the diagnostic journey and life impact of cholangiocarcinoma: results from a large patient survey in the United States. J Clin Oncol. 2021;39(3):277.
Cancer Stat Facts: Liver and Intrahepatic Bile Duct Cancer. seer.cancer.gov. Accessed November 10, 2021. https://seer.cancer.gov/statfacts/html/livibd.html.
© 2021, Incyte Corporation. MAT-ONC-00156 11/21
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