Build your Cholangio

Team

Newly Diagnosed

If you have been diagnosed with cholangiocarcinoma, the single most important thing you can do is to see an oncologist and surgeon who specialise in your specific type of cancer.

Your Professional Specialist should have current experience in treating many other patients just like you, they should be involved in ongoing research. They should also be familiar with current clinical trials that could be available to you.

When it comes to treating cancer, expertise can mean the difference between life and death.

CCA Patient Toolkit

As a newly diagnosed patient “You do not know what you do not know – but must know, that’s what the CCA Patient Toolkit helps you with. A simple step-by-step guide that equips and empowers you to better respond and navigate your way forward from the moment you are diagnosed.  A bridge across the cancer information abyss and a pathway forward to keep you on track.

If you need help in finding what you are looking for or need help, please contact Claire Holmes our CCF Australia director of advocacy claire@CholangiocarcinomaAustralia.org

The International Cholangiocarcinoma Patient Registry (ICPR) is a collaborative effort between patients and the global research community. Patients can participate in unique and urgent research efforts by sharing your de-identified health records. You can join over 2,000 cholangiocarcinoma (bile duct cancer) patients in this critical effort now.

Patients and caregivers join here.

For more details on benefits and testimonials please visit CCF (USA) registry information page

CCA Patient Toolkit

Caregivers Toolkit

Supporter Toolkit

Biomarkers Matter

Clinical Trials

Find a Specialist

Molecular Profiling

2nd Opinions Matter

Find a Mentor

Helping you help yourself

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 — another reason why going to a major center is important — 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.

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