Lynch Syndrome Universal Screening

What is Universal Screening?

• Universal screening is testing that is done on a tumor to determine if the cause of the cancer might be a hereditary gene mutation.
• While some cancers are a result of random mutations acquired in a DNA sequence in one of your cells (sporadic), other cancers are a result of DNA imperfections that are passed from generation to generation. Universal screening is a tool that is used to distinguish if your cancer might be the result of an inherited mutation.

What do the results mean?

• Universal screening will determine if your cancer might be a result of inherited DNA mutations. If you DO have an inherited mutation in certain genes, it may indicate you have Lynch Syndrome.
• Lynch Syndrome is defined as having a non-working copy of a mismatch-repair mechanism gene. Mismatch repair (MMR) genes are important in repairing damaged DNA. If they are not working properly, a mutation can occur, and a cancer may develop.

Do all healthcare institutions perform universal Lynch screening?

• NO

If my institution doesn’t perform universal Lynch screening, can I request them to test my tumor for abnormal molecular genetics that may indicate I have Lynch syndrome?

• YES

How do I find an institution that offers universal screening?

• Although most large cancer centers do universal tumor screening there are still a number of places that do not.  You may want to ask the center where you are treated if this is something they do.

What impact will my universal Lynch screening results have on my medical care?

• If your tumor testing does not indicate evaluation for Lynch syndrome, you may still be referred for appropriate genetic evaluation if your age and/or family history indicates a need.

• If your tumor’s molecular genetics indicates, it will be recommended you see a genetics expert for further genetic evaluation. 

Can my health insurance be affected if I carry a gene change that has cancer risk associated with it?

• There are federal and state laws in place that help protect you from discrimination. A genetics expert in your state can inform you specifically.

What does universal Lynch screening mean for my family?

• Lynch syndrome is a hereditary condition. This means if you are diagnosed with this syndrome, there is a possibility that your family members have it as well, and are at increased risk for certain cancers. Genetic expert evaluation would determine which family members are appropriate for genetic testing in order to identify those at risk.

Am I entitled to my results?

• ABSOLUTELY