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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 Lynch syndrome can pass it to their child. Lynch syndrome is sometimes called “hereditary nonpolyposis colorectal cancer” or . Most healthcare professionals no longer use this term, since Lynch syndrome 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 Lynch syndrome, but most do not know it

Lynch syndrome gene mutations

Lynch syndrome cancers

Does everybody with Lynch syndrome get cancer?

Lynch syndrome screening & prevention

How common in Lynch syndrome?

Can Lynch syndrome skip a generation?

Genetic testing for Lynch syndrome?

Lynch syndrome testing cost

Lynch syndrome treatment

Lynch syndrome genes

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

EPCAM	MSH6
MLH1	PMS2
MSH2

Lynch syndrome cancers

The most common cancers associated with Lynch syndrome are colorectal and endometrial cancer. Depending on the gene, Lynch syndrome 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 Lynch syndrome get cancer?

Although the lifetime risk for cancer with Lynch syndrome is very high, not everyone with Lynch syndrome develops cancer. Following the guidelines for screening and prevention in people with Lynch syndrome 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.

Lynch syndrome guidelines

Cancer risks and management guidelines are different for each Lynch syndrome gene. It's important to know which Lynch syndrome 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 Lynch syndrome skip a generation?

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

How common is Lynch syndrome?

About one in 280 people in the U.S. has a Lynch syndrome 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 Lynch syndrome.

Genetic testing for lynch syndrome

Genetic testing for Lynch syndrome 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 Lynch syndrome. In these cases, additional genetic testing is usually recommended to confirm a Lynch syndrome diagnosis. Visit our genetic testing page for more information.

Lynch syndrome testing cost

Most private health insurers cover genetic counseling and testing for Lynch syndrome 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 Lynch syndrome may be available for about $250. Visit our paying for care page for more information.

Lynch syndrome cancer treatment

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

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

Some Lynch syndrome 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.