Managing Lynch Syndrome

Your DNA is not your destiny. Living with Lynch syndrome has taught me that while genetics play a major role in our health, the choices we make every day matter just as much. We often inherit more than just our genes—we often pick up our families’ habits too, and sometimes those aren’t the healthiest ones. But our genes don’t have to determine our future. Over time, I’ve experimented, learned and found routines that truly work for me. Here’s what’s helped, along with what research says about exercise, diet, aspirin, supplements and emerging vaccines.

Let’s start with exercise. Being active is one of the best ways to stay healthy with Lynch syndrome. A 2023 study found that regular activities like walking, biking or swimming can reduce inflammation and help the immune system in the colon. Another study with over 2,000 people showed that regular exercise is linked to a lower risk of colorectal cancer. For me, sticking with a walking routine matters more than intense workouts. Having a dog helps me get out for long walks every day. Every small effort counts and gives me a sense of control when life feels uncertain.

Consuming a healthy diet is important when you have Lynch syndrome. Social media can make diet feel like a test of willpower, and I’ve seen posts claiming that going fully plant-based will prevent cancer with Lynch syndrome. I get why that message is appealing. When you live with Lynch syndrome, you want clear answers. But no diet, however strict, can take away all cancer risk.

Research shows that eating plenty of fiber and whole foods is helpful. Fruits, vegetables, whole grains and nuts can lower the risk of colorectal cancer, while it’s wise to limit red and processed meats, sugary drinks and highly processed foods. I still enjoy an organic grass-fed steak now and then, but most days I choose fiber-rich foods, nuts, lean proteins, and sometimes a green banana or cooled pasta for resistant starch. I learned this from the CAPP2 trial.

Another important part of my prevention plan is medicine. Aspirin has been key for me over the past 10 years, but how much you take matters. The CAPP2 trial found that a higher dose, 600 mg a day, could cut colon cancer risk in half for people with Lynch syndrome. However, higher doses can cause more side effects like stomach irritation, ulcers, bleeding and a small increase in the risk of certain strokes. Over time, it can also affect your kidneys or cause anemia. Always talk to your doctor before starting aspirin, also known as chemoprevention, for Lynch syndrome.

The newer CaPP3 trial brought good news: low-dose aspirin (75 to 100 mg a day) gives similar protection with fewer risks. I’ve been on a higher dose for years, but after seeing these results, I plan to ask my doctor about switching to a lower, safer dose. This reminds me that sometimes less is better, and it’s always best to talk with your doctor before making changes.

Supplements can be tempting, especially on social media, where people promote large doses of antioxidants, curcumin, green tea extract or so-called miracle pills that claim to prevent cancer in Lynch patients. However, supplements can be risky. Some may not work well with prescription medicines, cause unexpected side effects, or be unsafe if not checked for safety. Many popular supplements have not been proven safe or effective for people with Lynch syndrome, so it is important to be careful and not believe bold claims too quickly. If it sounds too good to be true, it probably is.

Some evidence is promising: taking multivitamins and calcium for a long time has been linked with lower colon cancer risk in studies of people with Lynch syndrome. However, these studies only show a connection, not that one causes the other, and many supplements are not tested specifically for Lynch patients. Supplements can help, but they’re not without risks. They can cause side effects, not work well with medicines, or make you feel safer than you really are compared with proven strategies. I take a multivitamin myself, but I don’t count on it to protect me. Think of supplements as tools, not magic fixes, and always talk with a healthcare provider who really knows your personal risk before adding them to your routine.

Looking toward the future, research offers new hope. One of the most exciting new areas is research into cancer vaccines for Lynch syndrome. The idea is to help the immune system find and attack cells that could become cancerous before they do.

• LynchVax (University of Oxford) is in early development to target the abnormal cells that often drive cancer in Lynch syndrome carriers.
• Tri-Ad5 (Dana-Farber Cancer Institute) has shown promise in early trials by priming the immune system to recognize tumor-associated antigens.
• NOUS-209 (ImmunityBio) is another candidate designed to stimulate the immune system to intercept cancer development.

These vaccines are still years away from being widely available, but they offer real hope for stopping cancer before it starts. Staying informed and talking about possible trial participation with your healthcare team is important.

These strategies have taught me one thing clearly: there are no guarantees. No diet, supplement or vaccine can take away all risk. But using proven approaches gives me a sense of control and confidence in the choices I make every day. I stay active, eat fiber-rich and balanced foods, take aspirin, use supplements thoughtfully and keep up with vaccine research.

Living with Lynch syndrome has not been easy, but it has shown me the value of strength, progress and the power of daily choice. On top of vigilant medical surveillance, such as regular scopes and screenings, focusing on daily habits I can stick with helps me face uncertainty with strength. Good daily decisions give me hope. Knowledge is only powerful when it’s actionable, and there’s a lot you can do to empower yourself while living with Lynch syndrome.

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

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