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  3. Intrahepatic cholangiocarcinoma
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Intrahepatic cholangiocarcinoma


Title


Categories:
Rare Cancers
This disease is grouped under:
Primary liver cancer

Summary Summary


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Intrahepatic cholangiocarcinoma is a cancer that develops in the cells within the bile ducts; both inside and outside the liver. The terms cholangiocarinoma and bile duct cancer are often used to refer to the same condition. This condition occurs slightly more often in males than females and usually affects people who are between 50-70 years old. Signs and symptoms of intrahepatic cholangiocarcinoma include jaundice, abdominal pain, fever, weight loss, weakness and itching. Treatment options may include surgery to remove the bile duct and parts of the liver, chemotherapy and radiation.[1]
Last updated: 4/1/2014

Treatment Treatment


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Surgery to completely remove the bile duct and tumor is the only option that can possibly lead to a cure for patients. The type of operation will depend on the size and location of the cancer. For cases of intrahepatic cancers that cannot be surgically removed, a liver transplantation may be an option. In some cases, a liver transplant might even cure the cancer. Finally, radiation and chemotherapy are also treatment options available for intrahepatic cholangiocarcioma either in addition to surgery or on their own.[2]
Last updated: 4/1/2014
Do you have updated information on this disease? We want to hear from you.

Research Research


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Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Intrahepatic cholangiocarcinoma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations


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Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

  • Cholangiocarcinoma Foundation
    5526 West 13400 South, #510
    Salt Lake City, UT 84096
    Telephone: (801) 999-0455
    E-mail: info@cholangiocarcinoma.org
    Website: http://cholangiocarcinoma.org/
Do you know of an organization? We want to hear from you.

Living With Living With


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Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

  • The Social Security Administration has included this condition in their Compassionate Allowances Initiative. This initiative speeds up the processing of disability claims for applicants with certain medical conditions that cause severe disability. More information about Compassionate Allowances and applying for Social Security disability is available online.

Learn More Learn More


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These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • The American Cancer Society provides information on Intrahepatic cholangiocarcinoma. Please click on the link to access this resource.
  • Key C and Meisner ALW. Chapter 6: Cancers of the Liver and Biliary Tract. National Cancer Institute. SEER Survival Monograph.
  • Genetics Home Reference (GHR) contains information on Intrahepatic cholangiocarcinoma. This website is maintained by the National Library of Medicine.
  • The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.

In-Depth Information

  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Intrahepatic cholangiocarcinoma. Click on the link to view a sample search on this topic.

Selected Full-Text Journal Articles

  • Aljiffry M, Walsh MJ, Molinari M. Advances in diagnosis, treatment and palliation of cholangiocarcinoma: 1990-2009. World J Gastroenterol. 2009 Sep 14;15(34):4240-62. [PDF]

News & Events News & Events


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News

  • NIH Hosts Rare Disease Day Event, Twitter Chat
    January 24, 2019

GARD Answers GARD Answers


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Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • Is there a cure for this horrible disease? Also are there any new research trials going on now for people recently diagnosed with this disease? See answer


Have a question? Contact a GARD Information Specialist.

References References


  1. Bile Duct Cancer (Cholangiocarcinoma). Johns Hopkins Medicine Liver Tumor Center. http://www.hopkinsmedicine.org/liver_tumor_center/conditions/bile_duct_cancer.html. Accessed 4/1/2014.
  2. Bile Duct Cancer (Cholangiocarcinoma). American Cancer Society. October 30, 2013; http://www.cancer.org/acs/groups/cid/documents/webcontent/003084-pdf.pdf. Accessed 4/1/2014.
Do you know of a review article? We want to hear from you.
You can help advance
rare disease research!
You can help advance rare disease research!
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Find out how with the NCATS Toolkit.

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