Honey Hireme-Smiler at 2024 CCF Annual Conference

Are you or a loved one navigating a cholangiocarcinoma diagnosis?

CCF understands that a diagnosis can leave patients feeling isolated and afraid. Whether you’re newly diagnosed or new to the Foundation, we are here to support you and your loved ones. You are not alone.

To help us better guide you, we encourage you to take our Welcome Survey and join our Newly Diagnosed/Newly Connected program.

This survey takes 10 minutes to complete and provides quick access to resources such as:

  • A Newly Diagnosed/Newly Connected Care Kit
  • Navigating a Cholangiocarcinoma Diagnosis: Resource Roadmap Workbook and its related webinar hosted by our Chief Patient Officer and our Newly Connected email series
  • A 1:1 meeting with a CCF Patient Advocate

You’ll learn about support groups, CCF’s mentorship program, free books, and more.


Find the Right Team

If you have been diagnosed with cholangiocarcinoma, the single most important thing you can do is to see an oncologist and surgeon who specialize in your specific type of cancer; this may require a second opinion. When it comes to treating cancer, expertise can mean the difference between life and death.

Your specialist should:

  • Have experience treating many other patients like you
  • Be involved in ongoing research
  • Have clinical trials available for you

Get the Right Treatment

Ask your doctor about biomarker testing (molecular profiling). Biomarker testing scans the DNA of your cancer cells for cancer-causing genetic mutations and other molecular abnormalities. This information can be used to match some patients to the most effective treatment available, whether it’s an existing drug or one under study in a clinical trial.

While comprehensive biomarker testing is not yet routine, it is covered for all Medicare patients with advanced solid tumors. It is also increasingly offered at academic medical centers and is frequently part of clinical trial protocols.

Most cancers, when first diagnosed, have a standard of care: a treatment regimen that is widely accepted as the best approach to fighting the disease.  The standard of care for cholangiocarcinoma can be found by looking at the National Comprehensive Cancer Network guidelines, which are based on the most up-to-date scientific evidence.

Patients on 5-FU or Capecitabine (Xeloda)

Be aware of potential for an adverse drug reaction if not pre-screened for DPD Enzyme deficiency

Participant Engagement & Cancer Genome Sequencing Program

Volunteers needed for “Moonshot Program”


Participate in Patient-Powered Research

You have the option to share your health data and drive patient power research, including biomarker testing data and other health information, with the research community. Gathering and analyzing patient data can help researchers generate new discoveries and treatments that could directly impact your care and improve the lives of future generations. Please consider sharing your data.


Get Connected & Find Support


Caregiver Resources

Ambuj Srivastava

CCA Caregiver since 2019

Toronto, Canada

Jill Neubauer

CCA Caregiver since 2019


Laura Lee

CCA Caregiver since 2019

Durham, Nc


Kirsten Chepeus

Stage III intrahepatic cholangiocarcinoma

Matt Reidy’s Story

CCA Patient

Sharon Hockenberry’s Story

CCA Patient
Thank You Partners and Sponsors

Thank you to AstraZeneca for providing 200 care kits to cancer patients in Canada
and sponsoring our Research Advocacy Training program.