Bile duct cancer (also called cholangiocarcinoma) is not common. But that’s not much comfort to you if you are one of the few thousand people diagnosed in the U.S. each year.
Your odds of beating it and your treatment options depend in part on whether it has spread. The common symptoms of bile duct cancer (including jaundice, weight loss and, in later stages, abdominal pain) can be caused by many different things.
Although other causes for symptoms are more likely, it’s important to find out as soon as possible. This cancer can spread quickly. So if it is cancer, you’ll want to know so you and your doctor can get to work figuring out your best treatment options.
Because this cancer is rare, doctors know less about it, and there’s much less information available than for many other, better-known cancers. But less doesn’t mean no information. We’ve found a number of resources that can help you start to understand and come up with questions to ask your doctor.
But none of these resources are substitutes for medical advice. Use them to learn, find support and feel confident that you and your doctor are doing all you can to beat your diagnosis.
Bile Duct Cancer Overviews
A good place to start your research is with overviews that explain what this cancer is and your options for treating it. Some of these are very basic while others include more details.
Cholangiocarcinoma from Medline: This page offers very basic information and pictures.
Bile Duct Cancer detailed guide: The American Cancer Society offers detailed information on what this cancer is, the different stages, how it treated, survival rates and more.
Bile Duct Cancer Overview: The American Society of Clinical Oncology (ASCO) discusses what the bile duct is and the two kinds of bile duct cancer (based on location). The overview leads into sections on statistics, stages, treatments and more.
Organizations Devoted to Bile Duct Cancer
Since this disease is rare, not too many organizations exist that focus specifically on it. The Cholangiocarcinoma Foundation is the exception. It was founded by the family of a man who was not able to beat it. They were frustrated at the lack of information and wanted to help make it easier for other patients to get the help they need.
The Foundation funds research into this cancer and works to improve collaboration between researchers, doctors and other organizations. They also provide information and newsletters for patients and a list of the current clinical trials from the ClinicalTrials.gov website.
There’s also a discussion board with about two dozen forums on topics ranging from treatments and dealing with insurance companies to research and a members’ cafe (a place to try to forget for just a little while). There are also forums for caregivers. Some forums are more active than others, but when we visited several had new posts that day, about half had posts within the last 2-3 days and several more within the past week.
Research into Bile Duct Cancer
Although there’s less research on this cancer than many others, there are a number of organizations trying to understand it and find better ways to diagnose and treat it.
In 2012, scientists found several new gene mutations associated with bile duct cancer.
Cancer Research UK’s bile duct cancer research page describes a number of studies it supports/supported into treatment of the cancer at various stages. Some of these studies are underway now, and others were completed within the last few years. If you’re in the UK and interested in participating in a trial, a few are still recruiting (as of this writing).
If you’re in the US and would like to be part of a trial, check out the trials in the ClinicalTrials.gov database. This results list is for a basic search on cholangiocarcinoma. You can narrow these results to list only trials near you, only ones that are recruiting and more
Forums and Support Groups about Bile Duct Cancer
As much as it helps to have family and friends to lean on, sometimes you also need to connect with people who are or have been in your shoes. They can often better understand your feelings and struggles.
As mentioned above, the Cholangiocarcinoma Foundation has an online discussion board where you can find other people with this specific cancer. We have not been able to find any other active boards specific to bile duct cancer. The ones we did find did not have any new posts for months or even a year plus.
But you can also find more general support groups for cancer patients here. People in these groups may have different cancers, but many parts of the journey (chemo, side effects, etc) are very similar.
Information for Kids About Bile Duct Cancer
Do you have children you need to tell about your diagnosis? This can be a very hard conversation, but we’ve found resources to help you figure out what to say, based on your child’s age. There are also several organizations and websites specifically for children, to help them cope with their feelings about your cancer and connect with other kids in the same situation.
None are specific to bile duct cancer, but rather cancer in general. We list them on this page.
Caregiver Resources
Caregivers of someone with bile duct cancer also need support. It’s not selfish to seek out help for yourself. In fact, taking care of yourself can help you take better care of your loved one.
The Cholangiocarcinoma Foundation’s discussion boards include several forums for caregivers, including grief management and an In Memoriam section. These were the only caregiver forums we found specific to this cancer.
We also list caregiver resources relating to cancer in general on this page.
Although there’s not a lot of information on this cancer, we hope you’ll be able to find the information and support you need from what we’ve listed here.