Finding Support and Information After a Rare Cancer Diagnosis
Cholangiocarcinoma is a rare cancer, but resources and support are available
Editor’s note: This content is sponsored by Incyte Corporation.
During the third week of February, the cholangiocarcinoma community rallies together for World Cholangiocarcinoma Week to raise awareness of cholangiocarcinoma (CCA) around the globe.
CCA is a rare and often overlooked cancer that forms in bile ducts, which are tubes that connect the gallbladder and liver to the small intestine.(i) These ducts carry bile, a fluid made in the liver that helps with digestion.
Only about 8,000 people are diagnosed with CCA in the U.S. each year, although there may be more cases that go undiagnosed. Because of its non-specific symptoms – which may include abdominal pain, fatigue, and weight loss – CCA is difficult to diagnose and often happens at an advanced stage, when the prognosis is poor.(iii,iv)
Partnering with a healthcare team to determine individualized management plan
It's important for those with CCA to have proactive conversations with their healthcare team about an individualized management approach and the best care plan based on their goals and needs.
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 understand their options and make informed decisions.
"Cholangiocarcinoma is a very difficult diagnosis, but as a care team member, we are here every step of the way to help navigate treatment decisions and shape your journey," said Jackie.
Biomarker (short for "biological marker") testing allows healthcare providers to examine tissue from a patient's body to determine specific cancer biological molecules and further assess the exact type of cancer a patient has – which can open the door to more individualized disease management plans.(v)
"Early biomarker testing is a major advancement in helping to individualize cancer treatment. Each patient is different, so I advocate for all patients to get biomarker testing as soon as possible, so they know what their options are," stated Jackie.
In addition to advocating for an individualized management approach, patients and caregivers should also find a healthcare team they feel comfortable with.
"Every person has distinct goals for their health and cancer journey, making it critical to have proactive conversations with their care team from the start and throughout the entire process," added Jackie. "Having a close relationship with your care team is essential, as it gives you more confidence in their recommendations and allows you to better advocate for yourself."
"I always encourage patients and caregivers to be proactive and speak up for themselves. For example, when you come across new research or treatment options, don't be afraid to share with your team."
Embracing the CCA community as a resource
When confronted with a health challenge, lack of information, or the need for additional support, the CCA patient community can be a valuable resource. Advocacy groups like the Cholangiocarcinoma Foundation (the CCF) leverage experiences and knowledge from the broader CCA community that can help patients and caregivers as they navigate their diagnosis.
In 2009, Melinda Bachini, director of patient services at the CCF, was diagnosed with stage 4 cholangiocarcinoma after experiencing a series of symptoms that she attributed to her grueling job as a paramedic and suspected it could be gallstones.
After a series of failed treatments, Melinda eventually came across an experimental clinical trial that was evaluating a new therapy for individuals with cancer that had spread throughout their body. It was this trial that kickstarted Melinda's recovery and saved her life. With this second chance, Melinda wanted to do more for the cancer community that had given her so much in her time of need.
"A strong support system is essential to managing your diagnosis. It's important to realize that you're not alone in this journey and to utilize the cholangiocarcinoma community as a resource," said Melinda. "At the CCF, we realize how critical that sense of community is, so we support a variety of online support groups that allow patients and caregivers the ability to share personal experiences, resources and other tools to help manage this condition."
In Jackie's profession, she recognizes the significance of being a positive resource for her patients.
"While being diagnosed with CCA can be extremely overwhelming, it's important to encourage patients to stay positive and to remember that others are going through similar experiences," said Jackie. "The CCA community is incredibly tight-knit and inspiring, from the patients and caregivers to the advocates and researchers. Connecting with the community through support groups and social media can not only provide comfort, but also offer new learnings, and even friendships."
While everyone's journey with CCA may be different, Melinda often reflects on how her cancer journey has impacted her outlook on life.
"Every day is a gift, that's why when I was given a second chance, I decided to use my knowledge to support the cholangiocarcinoma community," said Melinda. "Through my team at CCF, we're able to advocate on behalf of patients as well as support research for potentially curative therapies that could help the thousands of individuals living with this disease. My hope is that the work we continue to progress at the CCF helps other patients, like myself, live long and fulfilling lives."
For additional information and resources on CCA, visit TestMyCholangio.com and cholangiocarcinoma.org.
The content presented in this article is not medical advice and should not replace a conversation with your Healthcare Professional, who is the best source of medical information about your individual diagnosis and management plan.
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© 2023, Incyte. MAT-ONC-00196 02/23
(i) "Cholangiocarcinoma: Definition." National Institutes of Health. https://ghr.nlm.nih.gov/condition/cholangiocarcinoma#definition. Accessed 1/12/23.
(ii) "Key Statistics for Bile Duct Cancer." American Cancer Society. https://www.cancer.org/cancer/bile-duct-cancer/about/key-statistics.html. Accessed 1/12/23.
(iii) Uhlig J, et al. Ann Surg Oncol. 2019;26:1993–2000.
(iv) Banales JM, et al. Nat Rev Gastroenterol Hepatol. 2016; 13:261-280.
(v) "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 1/13/23.
Incyte is a Wilmington, Delaware-based, global biopharmaceutical company focused on finding solutions for serious unmet medical needs through the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit Incyte.com and follow @Incyte.
