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Lynch Syndrome | When to Consider Testing

From the GYN Genetics Articles List

When should I consider testing for Lynch syndrome?When should I consider testing for Lynch syndrome?


According to MD Anderson, 5% of people with colorectal or endometrial cancer have Lynch syndrome. The Mayo Clinic estimates that 3 out of every 100 cases of colon cancer is caused by Lynch syndrome. Lynch Syndrome International (LSI) states that in the United States alone, between 600,000 and 1,000,000 people are projected to be affected by Lynch syndrome, though less than 5% are diagnosed.

According to LSI, the cancers caused by Lynch syndrome are often preventable. Thus, the condition being under diagnosed could be preventing many people from being proactive with their health and taking steps to minimize their cancer risks. Preventive measures that include surveillance, early diagnosis, and treatment could enhance the quality of life and longevity of those affected by Lynch syndrome. As a result, if you have the following risk factors you should consult with a genetics counselor to determine if testing for Lynch syndrome is right for you:
  • You have a cancer associated with Lynch syndrome, especially before age 50.
  • You have had an abnormal MSI/IHC tumor test result.
  • You have a family member who has tested positive for Lynch syndrome.
  • You have family members with cancer diagnosed at young ages.
  • You have family members with Lynch syndrome related cancers.
  • There is more than one generation of family members affected by a type of cancer.

Testing positive for Lynch syndrome does not mean you will develop cancer. However, it does increase your overall lifetime risks of certain cancers. For colorectal cancer, the risk can be up to 85%. For endometrial cancer, it could be up to 65%. There is also an overall increased risk of ovarian, stomach, breast, pancreatic, urinary/renal, liver, bile duct, and small bowel (intestinal) cancers. If you are positive for Lynch syndrome, you could also be at risk for developing multiple cancers during your lifetime, besides being diagnosed at a younger than average age.

Knowing you are positive for Lynch syndrome could cause some emotional and mental anguish, so you should take some time to work with a genetic counselor before having any testing done. While it can be stressful to know you have a higher risk for cancer, it can also allow you to be more proactive with your health and take risk management steps to try to minimize your risks. There is no easy answer. You will have to weigh your own pros and cons before making any final decisions. Regardless, you can do all you can to be as healthy as you can be so you can enjoy each and every day to the best of your ability. Lynch syndrome does not have to control your destiny.


This content was written by staff of HysterSisters.com by non-medical professionals based on discussions, resources and input from other patients for the purpose of patient-to-patient support.

09-21-2013 - 04:38 PM


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