Lynch Syndrome & Inherited Cancer

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.

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:

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

​​​​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.

Signs of Lynch syndrome

There are several red flags may indicate Lynch syndrome within a family. These include a personal or family history of: 

• colorectal cancer or endometrial cancer before age 50.
• a diagnosis of cancer with a biomarker known as MSI-High, or dMMR.
• a person diagnosed with colorectal or endometrial cancer at any age and a second diagnosis of any of the Lynch syndrome cancers listed above. 
• multiple people on the same side of the family who have been diagnosed with any of the Lynch syndrome cancers listed above.  

This is not a complete list. Speak with a healthcare professional to decide if genetic testing for Lynch syndrome is right for you. 

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.  

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 stage. Because these guidelines vary by gene, it's important to know and follow the guidelines recommended for your specific mutation.

Can Lynch syndrome skip a generation?

No, Lynch syndrome cannot skip a generation.

Lynch syndrome mutations are passed down from parents to children. 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. 

Cancer can skip generations.

Some people with Lynch syndrome may never develop cancer. They can still pass their mutation on to their children. A child who inherits their parent's Lynch syndrome mutation will be at increased risk for cancer. If a parent with a mutation never develops cancer, but their child who inherited their mutation develops cancer, it can appear as though the mutation has skipped a generation. 

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 DNA 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. 

How much does testing for Lynch syndrome 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 $350 or less. Visit our find financial assistance page for more information. 

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 to your gene 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. 

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 immunotherapy. Visit our sections on cancer treatment by gene, cancer type and treatment type for more information.