Cholangiocarcinoma Experience Sharing Wiki[]
This website is a proof of concept website for collecting patient experiences related to cholangiocarcinoma (bile duct cancer).
All content is in draft form, is not necessarily accurate and is not intended to substitute for consultations with medical professionals.
Why have a Wiki?[]
Cholangiocarcinoma (CC) patients often must endure challenging treatments, and they, along with their caregivers, must make many difficult decisions. Over the years, many patients have shared knowledge and experiences on the Cholangiocarcinoma Foundation Forums. While the discussion board is a wonderful resource, it can be difficult to find and aggregate patient experience information. This wiki intends to fill that gap by allowing patients afflicted with cholangiocarcinoma and their caregivers to record their experiences and offer tips for coping with the many challenges of CC.
How can you help?[]
This wiki only works if CC patients and caregivers contribute their experiences.
There are two important ways you can help:
- Contribute your experience -- Are there things that make you say "I wish I would have known that sooner!"? For treatments, procedures or clinical trials that you have experienced, what types of things would you relate to a new patient considering following the same path? Finding a place to add this crucial information to the wiki will be extremely helpful to future patients struggling to make the right decisions for their own health care.
- Contribute your research -- Perhaps you have not yet undergone a procedure, but have been doing research on this procedure either on the forums or elsewhere. Please add to the wiki any helpful experience or research information you find.
Don't worry about making a mistake and "messing up the wiki." The wiki can easily be reverted back to old content or fixed in some other fashion. Contributing your experience is much more important than any risk to the wiki.
Add your knowledge or learn from others in the following areas:[]
- Recently Diagnosed
- Surgery
- Chemotherapy
- Radiation
- Other Procedures
- Clinical Trials
- Hospice