Lynch syndrome

Common Name(s)

Lynch syndrome, Hereditary non-polyposis colorectal cancer (HNPCC)

Lynch syndrome is a genetic condition that causes an increased risk for several different types of cancer. People with Lynch syndrome have a lifetime cancer risk of 52-82% for colorectal (cancer of the colon or rectum), 25-60% for endometrial (cancer of the inner lining of the uterus), 6-13% for gastric (stomach cancer) and 4-12% for ovarian cancer. Lynch syndrome also causes a higher risk for cancer of the upper urinary tract, kidneys, small intestine, skin, and brain.

Lynch syndrome is caused by a mutation (change) in one of several genes important in our cell’s DNA (genetic code) repair. Mistakes happen when a cell makes a copy of its DNA during mitosis. Mitosis is the way our body’s cells make more cells (one cell splits into 2 cells). The MLH1, MSH2, MSH6, PMS2, and EPCAM genes make proteins which find and fix mistakes in the newly copied DNA. If one of these DNA repair proteins is missing, there is a greater chance for DNA copy errors to not be fixed, leading to the increased risk of certain cancers.

Mutations that cause Lynch syndrome can occur by chance for the first time in a family (de novo), but are often inherited from a parent in an autosomal dominant manner (a mutation in one copy of the gene causes the condition). People with Lynch syndrome will have a 50% chance of passing it on to any of their children.

Lynch syndrome is often diagnosed based on an individual’s cancer and family history. Genetic testing is used to confirm the diagnosis. If you or someone in your family has been diagnosed with Lynch syndrome, talk with a genetic counselor to discuss inheritance risks and testing options. Most doctors and specialists recommend you receive routine cancer screenings to catch any developing cancer in the early stages. Talk with your doctor about the most current options to screen for cancer. Support groups are a good source of information and help connect you with others living with Lynch syndrome.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Lynch syndrome" for support, advocacy or research.

Center for Jewish Genetics

The Center is dedicated to gathering and disseminating knowledge about Jewish genetic disorders and hereditary cancers. Its mission is to educate and serve health care professionals, clergy and the Jewish community.

Last Updated: 26 Dec 2012

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Colon Cancer Alliance for Research & Education for Lynch Syndrome

CCARE Lynch Syndrome is the national non-profit devoted to saving lives and leading the fight against Lynch syndrome through education, advocacy and research.

Last Updated: 5 Aug 2013

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Lynch Syndrome International

To provide support for those at high risk to hereditary Lynch syndrome cancers, public awareness of Lynch syndrome, education for medical offices and support for research endeavors.

Last Updated: 16 Jun 2015

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General Support Organizations

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How do you compare to others with this condition?

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Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Lynch syndrome" for support, advocacy or research.

Center for Jewish Genetics

The Center is dedicated to gathering and disseminating knowledge about Jewish genetic disorders and hereditary cancers. Its mission is to educate and serve health care professionals, clergy and the Jewish community.

http://www.jewishgenetics.org

Last Updated: 26 Dec 2012

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Colon Cancer Alliance for Research & Education for Lynch Syndrome

CCARE Lynch Syndrome is the national non-profit devoted to saving lives and leading the fight against Lynch syndrome through education, advocacy and research.

http://fightlynch.org/

Last Updated: 5 Aug 2013

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Lynch Syndrome International

To provide support for those at high risk to hereditary Lynch syndrome cancers, public awareness of Lynch syndrome, education for medical offices and support for research endeavors.

http://www.lynchcancers.com

Last Updated: 16 Jun 2015

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Lynch syndrome" returned 297 free, full-text research articles on human participants. First 3 results:

The gate-keeping role of surgeons with regard to endometrial cancers in Lynch syndrome.
 

Author(s): Min Kyu Kim

Journal: J Gynecol Oncol. 2017 Jan;28(1):e17.

 

Last Updated: 28 Nov 2016

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Management strategies in Lynch syndrome and familial adenomatous polyposis: a national healthcare survey in Japan.
 

Author(s): Tomoki Yamano, Michiko Hamanaka, Akihito Babaya, Kei Kimura, Masayoshi Kobayashi, Miki Fukumoto, Kiyoshi Tsukamoto, Masafumi Noda, Nagahide Matsubara, Naohiro Tomita, Kenichi Sugihara

Journal: Cancer Sci.. 2017 Feb;108(2):243-249.

 

Lynch syndrome (LS) and familial adenomatous polyposis (FAP) are major sources of hereditary colorectal cancer (CRC) and are associated with other malignancies. There is some heterogeneity in management strategies in Japan. We undertook a survey of management of hereditary CRC in ...

Last Updated: 21 Nov 2016

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Evaluation of MT1XT20 Single Quasi-Monomorphic Mononucleotide Marker for Characterizing Microsatellite Instability in Persian Lynch Syndrome Patients.
 

Author(s): Najmeh Farahani, Parvaneh Nikpou, Mohammad Hassan Emami, Morteza Hashemzadeh, Mehrdad Zeinalian, Seyed Shervin Shariatpanahi, Rasoul Salehi

Journal: Asian Pac. J. Cancer Prev.. 2016 ;17(9):4259-4265.

 

Colorectal malignancies with high microsatellite instability (MSI-H), either hereditary (Lynch syndrome) or sporadic, demonstrate better prognosis and altered response to 5FU chemotherapy. It is now recommended to perform MSI testing for all new cases of colorectal cancer regardless ...

Last Updated: 31 Oct 2016

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Lynch syndrome" returned 54 free, full-text review articles on human participants. First 3 results:

[Lynch syndrome: case report and review of the literature].
 

Author(s): Laila Bouguenouch, Imane Samri, Khadija Belhassan, Hanane Sayel, Meriame Abbassi, Sanae Bennis, Dafr Allah Benajah, Adil Ibrahimi, Afaf Amarti, Karim Ouldim

Journal:

 

Lynch syndrome or hereditary nonpolyposis colorectal cancer (HNPCC) is the most common form of hereditary colorectal cancers. It increases cancer susceptibility, the risk of colorectal cancer in first-degree, endometrial cancer in women, and to a lesser extent, other cancers (ovarian, ...

Last Updated: 19 Sep 2016

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Genetic testing for hereditary cancer predisposition: BRCA1/2, Lynch syndrome, and beyond.
 

Author(s): M J Hall, E I Obeid, S C Schwartz, G Mantia-Smaldone, A D Forman, M B Daly

Journal: Gynecol. Oncol.. 2016 Mar;140(3):565-74.

 

Obstetrician/gynecologists and gynecologic oncologists serve an integral role in the care of women at increased hereditary risk of cancer. Their contribution includes initial identification of high risk patients, screening procedures like bimanual exam, trans-vaginal ultrasound and ...

Last Updated: 24 Feb 2016

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Practical issues related to uterine pathology: staging, frozen section, artifacts, and Lynch syndrome.
 

Author(s): Robert A Soslow

Journal: Mod. Pathol.. 2016 Jan;29 Suppl 1():S59-77.

 

This review covers three areas in endometrial tumor pathology: International Federation of Gynecology and Obstetrics (FIGO) staging, the use of frozen section, and Lynch syndrome. The section on FIGO staging will emphasize problems that practicing pathologists often confront, such ...

Last Updated: 30 Dec 2015

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Multi-Organ Screening Recommendations in Patients With Lynch Syndrome
 

Status: Recruiting

Condition Summary: Lynch Syndrome

 

Last Updated: 10 Mar 2017

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Last Updated: 8 Feb 2017

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Diagnosis of Lynch Syndrome Based on Next-generation Sequencing in Colorectal Cancer
 

Status: Not yet recruiting

Condition Summary: Lynch Syndrome

 

Last Updated: 8 Feb 2017

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