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Lynch Syndrome & Inherited Cancer

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What is Lynch Syndrome?

is an inherited condition that increases the risk for colorectal, endometrial and several other types of cancers and causes these cancers to run in families. It is caused by a mutation in one of five different genes. A parent who has can pass it to their child. is sometimes called “hereditary nonpolyposis colorectal cancer” or . Most healthcare professionals no longer use this term, since increases the risk for other cancers.

1 of 5 genes

Caused by a mutation in , , , , or

1,600

Causes about 1,600 endometrial cancers per year

3,800

Causes about 3,800 colorectal cancers per year

1 in 280 People

Have , but most do not know it

genes

Mutations in the five genes listed below cause . Each gene is associated with different risks and guidelines. Learn more about each gene by clicking on the name.

 

​​

cancers

The most common cancers associated with are colorectal and endometrial cancer. Depending on the gene, may also increase the risk for other cancers, including:

  • ovarian
  • bladder
  • brain 
  • kidney
  • other cancers
  • gastric
 

 

​​​​Cancer risks and management guidelines vary by gene, so knowing which mutation you have is very important. A genetics expert can help you understand more about your genetic test results.

Does everyone with get cancer? 

Although the lifetime risk for cancer with is very high, not everyone with develops cancer. Following the guidelines for screening and prevention in people with increase the chances of preventing cancer or catching it at its earliest and most treatable . Because these guidelines vary by gene, it's important to know and follow the guidelines recommended for your specific mutation.

guidelines

Cancer risks and management guidelines are different for each gene. It's important to know which gene mutation you have. The name of your gene mutation will be listed on your genetic test results. Once you know your gene, you can view the risk-management guidelines for your gene by clicking on the link above. Speaking with a genetics expert can help ensure that you receive the most accurate and up-to-date information about options for managing your cancer risk. 

Can skip a generation?

mutations are passed down from parents to children, but they do not skip generations. Each person with has a 50% chance of passing their mutation on to each of their children. Children who did not inherit their parent's mutation cannot pass the mutation to their children. 

How common is ?

About one in 280 people in the U.S. has a  mutation, but many of them may not be aware of their increased risk for cancer. Genetic testing is the only way to know if you have .  

Genetic testing for  

Genetic testing for  can be performed with blood, saliva or tissue. The sample is collected and sent to a genetic testing lab that checks the  for abnormalities. Test results are usually available two to six weeks later. Sometimes, in people diagnosed with cancer, tumor testing finds changes that suggest . In these cases, additional genetic testing is usually recommended to confirm a  diagnosis. Visit our genetic testing page for more information. 

testing cost

Most private health insurers cover genetic counseling and testing for with low or no out-of-pocket costs for people who have a personal history or a family history of cancer that meets certain criteria. For people whose insurance plan will not cover testing or people with no health insurance, genetic testing for may be available for about $250. Visit our paying for care page for more information. 

cancer treatment 

Treatment for a cancer depends on the several factors, including:

  • the type of cancer.
  • the of cancer.
  • the presence or absence of changes in the cancer, known as biomarkers. 

Some cancers are more likely to respond to treatment with . Visit our sections on cancer treatment by gene, cancer type and treatment type for more information. 

Get Support  ›

Speak with other previvors who share your gene mutation and situation.

Enroll in Lynch Syndrome Research  ›

Search for studies enrolling people with Lynch syndrome.

Meet FORCE's Lynch syndrome community

Lurked in My Family’s Genes for Years Before Colon Cancer Took My Son

READ MORE  ›

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Lynch Syndrome Research

Early Detection of Colorectal Cancer for People with Lynch Syndrome

Early Detection of Colorectal Cancer for People with Lynch Syndrome

This study will colect blood and stool samples to detect colorectal cancer or precancerous polyps...

Testing A Combination Of Vaccines For Cancer Prevention In Lynch Syndrome

Testing A Combination Of Vaccines For Cancer Prevention In Lynch Syndrome

This study is being done to assess the safety and effectiveness of a series of...

Studying the Use of Naproxen and Aspirin for Cancer Prevention in People with Lynch Syndrome

Studying the Use of Naproxen and Aspirin for Cancer Prevention in People with Lynch Syndrome

The trial is enrolling people with Lynch syndrome. On average, the length of this study...

Behind the Headlines

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Study : Two immunotherapy drugs are better than one for some metastatic colorectal cancers

Combining two immunotherapy drugs is a more effective treatment for certain metastatic colorectal cancers than...

Hereditary cancer gene guidelines expand

Guideline : Hereditary cancer gene guidelines expand

The National Comprehensive Cancer Network regularly updates guidelines for several types of hereditary cancer. These...

News from the FDA - Two new metastatic colorectal cancer treatments

Update : News from the FDA - Two new metastatic colorectal cancer treatments

The FDA recently approved two new treatments for metastatic colorectal cancer. (Posted 3/22/24) Este artículo...