Bile Duct Cancer
The bile ducts are a series of thin tubes that connect your liver to your gallbladder, your small intestine. Their major job is to move a fluid called bile from the liver and gallbladder into the small intestine where it helps digest fats in the food. Cancer of the bile duct, called cholangiocarcinoma, is an uncommon form of cancer that occurs mostly in people older than age of 50, but it can occur at any age.
Because the bile ducts are deep inside the body, small tumors can’t be seen or felt during routine physical exams, and there are no blood tests or other tests that can reliably screen for bile duct cancers. Because of this, most bile duct cancers are found only after the cancer has grown enough to cause signs or symptoms.
Mayo Clinic gastroenterologist Dr. Bret Petersen discusses bile duct cancer on this segment of Mayo Clinic Radio.
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I did not have bile duct cancer, but with PSC (Primary Sclerosing Cholangitis) I was at high risk for developing it. When my local transplant team suspected that I might have cholangiocarcinoma, they were unable to get thru my bileducts because of the obstruction. They sent me to Mayo for testing, which showed that I did not have it. I was placed back on the transplant list and remained at Mayo for my transplant.
I am grateful that my original doctors knew to send me to Mayo.
Thank you for this presentation.
Thank you for this informative video about bile duct cancer/cholangiocarcioma. I urge anyone who has been diagnosed with this cancer–regardless of the staging—to visit the link below to The Cholangiocarcinmoma Foudation. The foundation is THE place to find out about the developments in research, targeted and immunotherapy treatments, surgery, transplant, etc… that Dr. Peterson discusses in this podcast. For those of you who live and are treated in Arizona, there are two of us—Michael and myself(Andrea)—who volunteer with The Cholangiocarcinoma Foundation as patient mentors. We are also patients here at Mayo Phoenix. Contact the foundation and ask to be connected to one of us. We know many, many patients who are doing well on innovative treatments. The Mayo Clinic oncologists, surgeons, and researchers are some of the most well known leaders in breakthrough therapies/treatments. The Foundation has a conference every year in Salt Lake which brings together bile duct patients, caregivers, oncologists, researchers, etc. from all over the world. All the information about how to attend this conference is on the Foundation website below. I am 48 years old and have been living with advanced unresectable bile duct cancer for 3 1/2 years now and thanks to a drug trial at the Mayo which targets my cancer mutation (FGFR2)– I have had relatively stable disease for almost 2 1/2 years(in counting :), I am able to manage the drug's side effects and at the same time live a high quality of life. Connecting with other patients going through the same diagnosis through the foundation and at their yearly conference has been a crucial part of my non-medical "treatment"—it's given me hope and a supportive community to connect with. Join us!
My name is Jerry Drennan
I was diagnosed with de novo cholangiocarcinoma prehillar in Feb 2017. I went thru chemoradiation protocol and I was transplant sept 2018.
My explant showed active residul microscopic adenocarcinoma positive for peranural invasion. My questions is are there others out there.
@jerrydrennan, you'll find others talking about bile duct cancer in the Cancer group: https://connect.mayoclinic.org/group/cancer/
Here for example, I see you've connected and helped others. Thank you.
– Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/
Yes ma'am thank you.
I am on there and have been there. I am just trying to see what's out there. More info another someone to help that has maybe onsite. Thank you
How do I get to active member.
Jerry–See my 10/2 post. There is a closed FB site. Go to FB and type into the search bar "Cholangiocarcinoma Warriors-Patients Only." Send a message to the administrators answering the questions and when sh confirms you are a patient, she will add you to the group.
Also, see my Oct 2nd post—Cholangiocarcinoma.org is THE SITE. There is a discussion board you can join. You can email them to ask for a patient mentor or to volunteer to mentor others. You will see when you explore the website that more than 1 Mayo Oncologist is on the Medical Advisory Board. It is legit! There is also a conference in April (2 days) in Utah that brings together patients, caregivers, oncologists, researchers, etc. — Mayo researchers are always among the presenters. See info on their website. (cholangiocarcinoma.org)
But I dont FB
@jerrydrennan, here is the link to the website that @afrancesca shared earlier. If you click on it, you will be taken to the page, There you can browse and find patient information, and information about cholangiocarcinoma. It looks like there is also a chat section (it follows a different form than you are used to seeing on Connect) . It looks like you don't have to be on Facebook. (I'm not on FB either, but I do read on websites like this for information) Rosemary
Thank you for your article. I have just been recently diagnosed with cholangiocarcinoma with an appt with the oncologist on June 1 to discuss treatment. I live in Utah and Mayo Phoenix is just a drive from us. I am 78 years old of Asian ethnicity.
I would like to continue this conversation with you and hopefully you can help me navigate this uncharted stage of my life. Thank you