Support and Resources for Your Cholangiocarcinoma Journey
We are here to help walk you through every step of treatment.
Meet Cholangiocarcinoma Survivors
TAKING THE FIRST STEPS
Nobody has to face Cholangiocarcinoma (CCA) alone.
ROADMAP
These next steps should help those with CCA and their loved ones find answers, support and hope during the first few weeks, months or years after diagnosis.
Are you or a loved one navigating a cholangiocarcinoma diagnosis?
You don’t have to face this alone. CCF is here to help you and your loved ones find support, answers, and community.
Take our 10-minute Welcome Survey to join the Newly Diagnosed/Newly Connected program and get quick access to:
- A Free Care Kit
- Our Resource Roadmap Workbook
- Newly Connected email series
- A 1:1 meeting with a Patient Advocate
- Info on support groups, mentors, and free books
- Join the Newly Connected Program
- & Get Your Free Care Kit
- Learn more about Cholangiocarcinoma
Find the Right Team
No, really. It’s important.
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 this rare cancer; this may require a second opinion. When it comes to treating cancer, expertise can mean the difference between life and death.
Get the Right Treatment
Get the Right Tests & Find the Right Treatment for Cholangiocarcinoma
BIOMARKERS
Ask your doctor about biomarker testing (molecular profiling). This test scans the DNA of your cancer cells for genetic mutations or other molecular changes that may be driving the disease. The results can help match some patients to the most effective treatment available, whether an approved therapy or one in a clinical trial.
Comprehensive biomarker testing isn’t yet standard for everyone, but Medicare covers it for patients with advanced solid tumors. It’s also increasingly available at major cancer centers and is often included in clinical trial protocols.
CLINICAL TRIAL
When first diagnosed, most cancers have a standard treatment that is considered the best approach for treating the disease. For cholangiocarcinoma, this is outlined in the National Comprehensive Cancer Network guidelines, which are based on the latest scientific evidence.
ANNOUNCEMENTS
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
Participate in Research
Researchers are trying to find individuals who might have a higCholangiocarcinoma is a rare but increasingly prevalent disease; scientists are still learning about its causes and effective treatment methods. Mayo Clinic’s Genome-Wide Association Study (GWAS) compares DNA from people with and without the disease. Participation is simple, free, and involves a small blood sample and a questionnaire. Your involvement could help improve prevention, detection, and care for patients and families affected by this disease.h risk for developing cholangiocarcinoma so they can identify new ways to detect, diagnose, and treat it.ย
Get Connected & Find Support
You Are Not Alone
Having the support of others is an important part of cancer survival. Research shows that taking part in support groups, where you both give and receive help, is an effective way to reduce the stress and anxiety that can come with diagnosis.
CONNECT WITH US ON SOCIAL
SURVIVOR STORIES
Matt Reidy’s Story
CCA Patient
SURVIVOR STORIES
Stephanie Kleine-Ahlbrandt’s Story
CCA Patient
