Lynch Syndrome Testing: The Importance of Tracking Your Own Family History

“My family is riddled with cancer.” I hear this phrase often in my work as a counselor and cancer navigator, and whenever someone says it to me, I always ask the same question: “What kind of cancers?” Because learning how to connect your family’s genetic dots when it comes to cancer could be lifesaving. And it all begins with understanding that certain cancers that don’t seem to be related actually could be, as is the case with the Lynch Syndrome gene. Knowing when to pursue Lynch Syndrome testing starts with tracking your family’s cancer history and recognizing the patterns. 

Lynch Syndrome Testing Can Help Connect the Dots

Most people know that there’s a link between breast cancer and ovarian cancer. But did you know that there’s a link between stomach cancer and pancreatic cancer? Or colon cancer and endometrial cancer? These connections aren’t as well-known, even to many healthcare providers. 

This is especially true when it comes to Lynch Syndrome, which is a genetic condition that increases your risk for several different types of cancers, including colon and rectal cancers, endometrial and ovarian cancers, stomach cancer, small bowel cancer, pancreatic cancer, prostate cancer, brain cancer, and more. 

1 in 279 people are living with Lynch Syndrome, and 95% don’t even know it. 

The cancers associated with Lynch are so varied that even many healthcare professionals miss the connection. Which can be scary, because if they’re not connecting the dots, how can patients and families be expected to? 

My Lynch Syndrome Story

Even for someone familiar with Lynch, it can be easy to miss these connections. That was my experience. 

Both my mom and dad had colon cancer, so I always knew I was at high risk for it as well. During my mom’s second diagnosis of colon cancer, she was tested for the Lynch Syndrome gene, and it turned out to be positive. 

Because of this, I was aware of Lynch early on and my risk for colon cancer. I started getting regular colon screenings in my 30s. I was also very diligent about staying current with my gynecological screenings every year, and I exercised daily and ate a healthy diet. 

I felt like I was doing everything right and “as if” I had the Lynch Syndrome gene. 

Because colon cancer was so much on my radar, I never really thought about the other cancers associated with Lynch. 

And then I was diagnosed with Endometrial Cancer in 2013. I hadn’t connected the dots or thought to look beyond colon cancer, even though I knew about Lynch and was being vigilant with my screenings. 

[To learn more about Lynch Syndrome, all the cancers associated with it, and how you can calculate your risk for it, read this blog post.]

What You Can Do: Talk, Test, Act

If I–someone who knew my mom had Lynch Syndrome and was being proactive about my health–could miss this connection, it’s clear that we all could stand to learn a bit more about putting our genetic puzzle pieces together. 

Here’s how you can start connecting the dots in your own family: 

1 TALK: Take Inventory of Your Family’s Cancer History 

Don’t just note that “cancer runs in the family.” Get specific! Make a list of:

• Which family members have had cancer

• What type of cancer did they have

• How old were they when diagnosed

• If anyone had multiple different types of cancer, and what they were

Then take this information to your doctor. 

Share the specifics with them and ask if there is any connection. Ask about any possible genetic testing that may be available to you. 

2 TEST: How to Know If You Need Lynch Syndrome Testing 

If your family history shows multiple cancers, especially if they’re different types of cancers or if people were diagnosed at younger ages, ask your doctor about genetic testing for hereditary cancer syndromes like Lynch. 

You can also use a screening tool such as the PREMM5 (linked) to assess your risk and determine if Lynch Syndrome testing is right for you. It’s free and just takes two minutes! 

3 ACT: Follow Through with Recommended Screenings

If you do test positive for a genetic syndrome like Lynch, or if your family history puts you at higher risk, make sure you’re getting all the recommended screenings. 

This may mean more frequent colonoscopies, endoscopies, or other cancer screenings, but they could be lifesaving. 

Advocate for Your Own Lynch Syndrome Testing

It’s not uncommon for me to talk to people about talking to their doctors about genetics. Just the other day, I had a conversation with someone who mentioned their family has “cancer all over the place.” I asked, “What kind?” Because there could certainly be a connection. 

Learning to put your own genetic puzzle pieces together and then bringing those pieces to your doctor could make all the difference. I firmly believe that knowledge is power!

If you’re ever curious about Lynch Syndrome or are looking for resources for your situation, I encourage you to reach out to me. I’m always happy to talk it through.