Shining a light on cancer care teams during National Family Caregivers Month

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Four years ago, Hank was the epitome of good health — as a veteran with an active lifestyle, nothing could stop Hank and his wife Beth from living life to the fullest. Then Hank started to rapidly lose weight and he realized something wasn’t quite right.

After a series of tests, Hank and Beth were left with limited insight as to what could be wrong. It wasn’t until an MRI came back with results that the couple never expected: Hank had stage 4 cholangiocarcinoma.

“One thing led to another and they told me that I have this cancer. They couldn't tell me a lot about it,” said Hank.

Cholangiocarcinoma, or CCA, is a rare and often easily missed cancer that forms in bile ducts, the tubes that connect the gallbladder and liver to the small intestine.[1] These ducts carry bile (fluid made in the liver that helps with digestion) to the small intestine. About 8,000 people are diagnosed with CCA in the U.S. each year, although there may be more cases that go undiagnosed.[2] In Hank’s case, it was not clear from his initial symptoms what the problem was and over a span of a year without any clear answers, the cancer grew and spread before his condition was accurately identified.

Symptoms of CCA

This rare cancer is often misdiagnosed, as its symptoms are non­specific[3]:

  • Fatigue
  • Fever
  • Weight Loss
  • Nausea and Vomiting
  • Abdominal Pain

Because diagnosing CCA can be challenging, it often remains undiagnosed until it has reached an advanced stage or spread throughout the body, and prognosis is poor.[4]

However, newer technology known as biomarker testing can help improve patients’ prognosis. Biomarker (short for "biological marker") testing allows doctors to examine tissue from a patient’s body to further assess the exact type of cancer a patient has — which can open the door to more individualized management plans.[5]

Biomarker testing supports individualized patient care

Jackie, a physician assistant in Houston, works alongside CCA patients and caregivers to ensure they have the latest resources and information available to help them decide how best to manage their disease.

“Early biomarker testing is an exciting way to individualize cancer treatment,” said Jackie. “This helps healthcare professionals identify the best steps forward for patients. And because of this, it's important that we do this testing early.”

Recognizing the important role of caregivers

Caregivers like Beth play a vital role in the decision-making process and are often by their loved one’s side to help advocate for them and ensure they are receiving the best care based on the patient’s needs and preferences.

With an unclear medical journey ahead, Hank and Beth have refused to let a stage 4 diagnosis stop them and continue to maintain a positive forward-looking attitude.

“And even though we have been told at stage four, four years ago, that there is no cure, we're going to have quality of life,” said Beth.

To learn more about the CCA patient and caregiver experience from Hank and Beth, click here.

Patients and caregivers interested in learning about biomarker testing can visit TestMyCholangio.com. For additional CCA information and resources, visit the Cholangiocarcinoma Foundation website, Cholangiocarcinoma.org.

© 2022, Incyte. MAT-ONC-00188 11/22



[1] “Cholangiocarcinoma: Definition.” National Institutes of Health. https://ghr.nlm.nih.gov/condition/cholangiocarcinoma#definition. Accessed 10/3/2022.

[2] “Key Statistics for Bile Duct Cancer.” American Cancer Society. https://www.cancer.org/cancer/bile-duct-cancer/about/key-statistics.html. Accessed 10/3/2022.

[3] “Signs of bile duct cancer include jaundice and pain in the abdomen.” NIH: National Cancer Institute. https://www.cancer.gov/types/liver/patient/bile­duct­treatment­pdq. Accessed 10/3/22.

[4] Uhlig J, et al. Ann Surg Oncol. 2019;26:1993–2000.

[5] “How are biomarkers used to treat cancer?” The University of Texas MD Anderson Cancer Center. https://www.mdanderson.org/cancerwise/how-are-biomarkers-used-in-cancer-treatment.h00-159460056.html. Updated April 5, 2021. Accessed 10/3/22.