What I Want You to Know about Lynch Syndrome

When I started looking into my family history and Lynch syndrome risk, I felt nervous and unsure. I met with a genetic counselor and other specialists before my test results. Their advice prepared me for any outcome. After diagnosis, I scheduled the recommended surgeries, scans, and scopes. Now, I have a yearly colonoscopy and take aspirin as my doctor recommends. This routine helps me feel in control of my health.

Accurate information about Lynch syndrome is essential. As more people discuss hereditary cancer online, misinformation increases. This can make people too worried or too relaxed. Relying on evidence-based facts leads to better decisions.

Genetic testing is more accessible, and some people receive results without speaking to a certified genetic counselor. A positive genetic test result can be overwhelming, while a negative one may create a false sense of comfort. As one person said, "I felt a wave of relief when my test results came back negative," showing how relief can lead to less caution. Another said, "Getting a positive result was scary, but it was a call to action." These stories highlight why professional guidance is crucial—both the results and the follow-up must be understood and addressed. A positive result means a gene change linked to Lynch syndrome; a negative result means it wasn't found. Misunderstanding results may lead to excessive or insufficient worry. That’s why talking to a genetic counselor is essential—they explain your results and help you decide the next steps.

If you are considering genetic testing, speak with a certified genetic counselor before and after the genetic test. They help you pick the right test, explain results, and advise on next steps. Genetic counselors recommend ways to lower risk, help set a screening plan, and discuss how results might affect life or disability insurance. Genetic counseling is a long-term partnership that evolves as your health and knowledge change. Reviewing key points repeatedly helps clarify them. Bring questions and write down important information to remember later. Shared understanding is vital for conditions like Lynch syndrome that span a lifetime.

Genetic testing can identify a Variant of Uncertain Significance (VUS), meaning it’s unclear if it raises cancer risk. A VUS does not mean you have Lynch syndrome. Genetic counselors explain VUS results, advise on screenings, and update you if the meaning changes. Work with a counselor to understand your VUS, get appropriate screenings, and stay informed about new research. Many VUS results later prove harmless or linked to disease, so stay in touch with your care team.

Lynch syndrome raises colorectal cancer risk more than other related cancers. Knowing this helps people act. Without regular colonoscopies, the colorectal cancer risk for those with Lynch syndrome can reach 80% but undergoing annual colonoscopies can cut this to about 10%. Research shows regular screening helps manage risk in Lynch syndrome. Screenings find and remove precancerous polyps, increasing control over health. Daily aspirin also lowers colorectal cancer risk. Studies like the CAPP2 trial show long-term aspirin use can help. Aspirin isn't a cure or a substitute for screening, but it is an important prevention step. Talk to your doctor to see if aspirin is right for you and to determine the right dose and monitoring.

The National Comprehensive Cancer Network (NCCN) is a trusted resource for Lynch syndrome. Their guidelines provide evidence-based screening, risk reduction, and testing advice. Following them helps you and your care team create up-to-date, thorough plans.

Misinformation is dangerous—it may lead people to skip proven prevention or wrongly believe lifestyle changes can erase genetic risk. Some may think colonoscopies or aspirin aren't needed. These mistakes hinder prevention. Fear spreads quickly, but facts help people make good decisions. Having Lynch syndrome doesn't mean you will get cancer, but it gives you information. Use this knowledge to act, not let fear decide.

If you have Lynch syndrome or suspect you do, meet with a certified genetic counselor. They explain your results, gene status, and next health steps. It's also important to inform your family members, as they may benefit from genetic counseling and testing. Understanding their risk can help them take preventive measures, too. Work with your doctor to plan prevention, including screenings and, if suitable, aspirin. With counseling, regular screenings, aspirin if advised, and trusted sources like NCCN, you can protect your health. Social media may give one a sense of community, but it should not be relied upon for medical guidance. Rely on professionals and proven guidelines for major decisions.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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