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I Have Lynch Syndrome, Now What?

Of the possible 1,000,000 Lynch syndrome carriers in the USA alone, it is estimated that only about 5 percent have been tested.
PUBLISHED August 16, 2016

Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”

Of the possible 1,000,000 Lynch syndrome carriers in the USA alone, it is estimated that only about 5 percent have been tested. However, being genetically tested in not enough. Knowledge is only power when you truly understand your risks and can take measures to maintain your health and minimize your cancer risks.

1.Be sure to see a certified genetic counselor or reach out to me and I will be more than happy to help you find one. In my opinion as an advocate for those with hereditary cancer syndromes, it is optimal to see a counselor before and after genetic testing.

2. Be sure you fully understand your mutation because not all Lynch syndrome mutations are the same. Prophylactic surgeries and cancer risks vary amongst mutations and most doctors do not know this. This is why I highly urge you to speak to a certified genetic counselor.

3. Some, not all, Lynch syndrome mutations may warrant the removal of the reproductive organs for women. Please talk to a certified genetic counselor to discuss your family history and personal risks. Removing reproductive organs is a big deal and can open you up to a host of other health issues.

4. Ask your certified genetic counselor to help you find medical practitioners who are well-versed in Lynch screening protocols. In my opinion, I think it’s best for patients to go to places such as the Mayo Clinic in Rochester, Minnesota. Mayo in Rochester has a stellar team of doctors who are highly knowledgeable about Lynch screening and Lynch syndrome-related cancers. Lynch mutations require frequent, meticulous and various screening measures. Plus, Mayo can do all the testing and screening you need within a matter of a few days. Please note that it also has financial assistance programs available for those in need.

“In a recent study, few patients whose families met clinical criteria for hereditary non-polyposis colorectal cancer (Lynch syndrome) had undergone genetic testing, and only a small percentage of their doctors had given them appropriate screening recommendations.” (

This is a big problem and why I recommend places like Mayo clinic. People are developing cancers and needlessly dying.

5. Be sure that you are vigilant with your screenings. Frequent, meticulous screenings are absolutely imperative because if cancer is detected, it may be caught early when it is most treatable and medical intervention is minimized.

6. Some people are overwhelmed with discovering they have Lynch syndrome. This is completely understandable, especially since many who have this syndrome discover it through the death of a loved one. This is not an easy syndrome to reconcile. Many may mourn the loss of their body parts due to prophylactic surgery or cancer; some feel the constant dread of having to worry about cancer developing, or worst of all, many worry about passing this mutation on to their children.

7. If you are having difficulty with anxiety, sleeping and coping with your diagnosis, please ask your certified genetic counselor to help you find a psychologist and/or psychiatrist who has expertise in dealing with those with hereditary cancer syndromes. Sometimes counseling and medication are necessary because this diagnosis can be emotionally overwhelming.

8. Take care of yourself and adopt a healthier lifestyle. Stop smoking, eat mostly a plant-based diet, exercise and limit your alcohol intake. Just because you have Lynch syndrome does not guarantee you will definitely develop cancer. Taking proactive measures will help you feel that you are more in control of your situation. These external factors, known as epigenetics, matter, too. Your genes do not have to define your destiny.

9. You will reconcile with your diagnosis with the passage of time. There will come a day when you no longer feel so overwhelmed and accept the diagnosis. Please be patient.

10. There is light at the end of the tunnel for those of us with Lynch syndrome. Immunotherapy is showing promise for those with Lynch syndrome-related cancers. This should give all us tremendous hope and solace.

Georgia M. Hurst
Founder and Executive Director of
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