Lynch Syndrome Q&A

If I have Lynch syndrome, can I do anything to reduce my cancer risk?

I have Lynch syndrome and have already had cancer. Can I get cancer again?

If my sister/brother has Lynch syndrome, what is the likelihood that I have it too?

Will my insurance pay for Lynch syndrome gene testing?

Should I have my entire colon removed if I have Lynch Syndrome?

How common are inherited cancers?

What is the process to find out if I have Lynch Syndrome?

What about insurance problems if my insurer knows I have Lynch Syndrome?

My mother/father tested positive for a Lynch Syndrome, but I was negative.  Can my children get it?

Are colon and endometrial/uterine cancers the only cancers I am at risk for?

If I have Lynch Syndrome, and I have had numerous clear colonoscopies, why do I have to keep going for colonoscopy?

My doctor wants to do a sigmoidoscopy or virtual colonoscopy instead of a colonoscopy. Is this okay?

Can I prevent the Lynch Syndrome cancers by implementing healthy lifestyle changes?

Does Lynch Syndrome affect both men and women?

If I have Lynch Syndrome, when should my kids get gene testing?

If I have Lynch Syndrome, who in my family needs to know?

 

 If I have Lynch syndrome, can I do anything to reduce my cancer risk?

  • Yes. Lynch syndrome does pose an increased risk of cancer; however, a diagnosis of Lynch syndrome also presents an opportunity to take preventive measures. There are several preventive strategies to reduce the risk of developing cancer, including recommended screening tests, daily aspirin, and preventive surgery. To learn more about how to reduce your risk of cancer, visit Next Steps for You.

 

 

I have Lynch syndrome and have already had cancer. Can I get cancer again?

  • Yes, unfortunately cancer can strike more than once. Even if you have already had cancer, it is important to maintain a regular screening schedule and to take appropriate preventive measures to reduce your risk of developing a second cancer.

 

 

If my sister/brother has Lynch syndrome, what is the likelihood that I have it too?

  • If a first-degree relative (parent, sibling or a child) has Lynch syndrome, there is a 50 percent chance that you have it too. Lynch syndrome is an inherited condition, so if a parent has Lynch syndrome, he/she has a 50 percent chance of passing it on to each child.

 

 

Will my insurance pay for Lynch syndrome gene testing?

  • In general, most insurance companies cover genetic testing. Typically most patients have 90 to 100 percent coverage for this service. Insurance companies and Medicare will pay for Lynch syndrome genetic testing if it is determined to be medically necessary. Discuss your options with your physician and genetic counselor and contact your insurance company to learn more.

 

 

Should I have my entire colon removed if I have Lynch Syndrome?

  • Some people opt to undergo a preventive colectomy at the time of their first colon cancer diagnosis.  Colectomy is a surgery, to remove the colon before an additional cancer develops. This is a serious measure that is generally only considered when someone is unable or unwilling to undergo regular screening colonoscopy.

 

 

How common are inherited cancers?

  • Current research suggests that only 5-10% of cancers are inherited. This hereditary influence begins with the genes that are passed from parent to child. Genes come in pairs, with one copy inherited from each parent. Parents can pass on a normal copy or, if they have one, an abnormal or mutated copy of a gene.

 

 

What is the process to find out if I have Lynch Syndrome?

  • There are a number of ways to finding out if you have Lynch syndrome.
    • If you are referred for genetic counseling , the counselor will take an extensive personal and family history, counsel you on hereditary cancer including Lynch syndrome. If the counselor feels that you are an appropriate candidate for Lynch syndrome testing then you may choose to undergo genetic testing.  There are two types of tests used for detecting Lynch syndrome—pathology tests and genetic blood or saliva tests.
    • If a first-degree relative has been diagnosed with Lynch syndrome, you may wish to undergo genetic testing to determine whether you have inherited the condition. You will need a copy of your relatives genetic test results in order for the genetics professional to order the correct the genetic test. The genetic test which is done by using either blood or saliva.
    • If your colon or endometrial tumor was automatically screened for Lynch syndrome at your medical center and showed features of Lynch syndrome you will be referred to genetics for further assessment for Lynch syndrome. The genetic counselor will take an extensive personal and family history and offer you either further tumor testing or genetic testing. To learn more about the process, visit Diagnosing Lynch Syndrome.

 

 

What about insurance problems if my insurer knows I have Lynch Syndrome?

  • The Genetic Information Nondiscrimination Act (GINA) is an important piece of legislation that protects individuals from genetic discrimination—both by health insurance companies and employers. GINA provides a number of protections and prohibits insurers from using genetic information to make enrollment or coverage decisions. To learn more about GINA, visit Next Steps for You and Resources.

 

 

My mother/father tested positive for a Lynch Syndrome, but I was negative.  Can my children get it?

  • Not from you. The fact that you tested negative means that you do not carry your family’s Lynch Syndrome gene mutation.  If you do not carry the family mutation you cannot pass on mutation.

 

 

Are colon and endometrial/uterine cancers the only cancers I am at risk for?

  • No. Although colon and uterine cancers are the most common cancers associated with Lynch syndrome, there are several other cancers associated with the genetic condition, including cancers of the ovary, small intestine, gastric,  urinary tract, hepatobiliary tract, pancreas, skin, and brain.  The risk for these cancers are not as significant as the risk colon and endometrial, however in some cases additional cancer screenings are recommended to screen for these and other cancers.  For more information about the types of cancer associated with Lynch syndrome click here: Cancer Risk and Lynch Syndrome

 

 

If I have Lynch Syndrome, and I have had numerous clear colonoscopies, why do I have to keep going for colonoscopy?

  • It is critically important to continue regular colonoscopy screening. Scientific evidence has proven that individuals with Lynch syndrome who do not follow the recommended screening guidelines of annual colonoscopy starting at age 40 have a higher incidence of colon cancer diagnosis. In order to prevent these detectable cancers individuals must undergo colonoscopy every 1-2 years between the ages of 20-39 and annual colonoscopy starting at age 40.

 

 

My doctor wants to do a sigmoidoscopy or virtual colonoscopy instead of a colonoscopy. Is this okay?

      • No, absolutely not. Sigmoidoscopy and virtual colonoscopy are not acceptable screening tools  in individuals with Lynch syndrome who have such an increased risk of developing cancer. Colonoscopy is the most appropriate screening tool. A sigmoidoscopy only examines the lower part of the colon and can potentially miss polyps further up in the colon, whereas colonoscopy allows a physician to view the entire colon.

 

 

Can I prevent the Lynch Syndrome cancers by implementing healthy lifestyle changes?

      • No, there is no scientific evidence that changing your lifestyle can prevent cancers caused by Lynch syndrome. A healthy lifestyle is always important for maintaining good general health and preventing heart disease, diabetes etc, but the bottom line is having a healthy lifestyle is not a substitute for complying with the Lynch syndrome cancer screening guidelines.

 

 

Does Lynch Syndrome affect both men and women?

      • Yes, Lynch syndrome does not discriminate—it affects males and females equally.

 

 

If I have Lynch Syndrome, when should my kids get gene testing?

      • We recommend that children undergo genetic testing by the ages of 18-20.
      • If you have been identified to have a genetic mutation that causes Lynch syndrome then your children should be tested to see if they have inherited the genetic mutation.

 

 

If I have Lynch Syndrome, who in my family needs to know?

    • Your first and second degree relatives at the VERY LEAST. This includes your children, parents, siblings, aunts, uncles grandparents. If you know what side of the family Lynch syndrome runs in (your mother or your father’s side) then you only need to tell that side. If you do not know, you need to tell both sides of your family.