Is Colon Cancer Risk Hiding in Your Genes?

Three-time cancer survivor Wenora Johnson shares what she’s learned about hereditary colon cancer:

Most of us know of someone who has battled colorectal cancer. It is the second deadliest form of cancer and affects about 150,000 Americans each year. But the disease doesn’t always strike at random — as many as 10% of colorectal cancer patients have an inherited gene mutation that caused their illness. I should know, because I was one of them.

Most people diagnosed with colorectal cancer are at least 65 years old, but I was only 45 when doctors discovered my cancer, which they believed had been growing inside me for at least a decade. As someone who exercises regularly and maintains a healthy diet, I was shocked by my diagnosis. My doctors and I assumed that it was simply a case of bad luck.

I underwent surgery and three months of chemotherapy, which cured my cancer. For a few years, I seemed to be in the clear. What I didn’t know was that I had Lynch syndrome, the most common cause of inherited co­lorectal cancer in people under 50.

What is Lynch syndrome?

Roughly 1 million Americans are believed to have Lynch syndrome, but only 5-10% are aware of their status. Caused by a genetic mutation unknowingly passed from parents to children, Lynch syndrome increases a person’s chances of developing more than a dozen types of cancer — especially colorectal and endometrial (uterine) cancer. Those affected often have a family history of cancer and are diagnosed at a younger-than-average age.

Other than my mother passing away from brain cancer, I had no warning signs that Lynch syndrome ran in my family. However, shortly after my own battle with cancer in 2011, my 41-year-old brother was diagnosed with stage 4 colorectal cancer. Later, my aunt revealed that my grandfather had died from colorectal cancer at age 38. In light of this new information, my oncologist recommended that I undergo genetic testing, which is when I discovered that I have Lynch syndrome.

Preventing and detecting cancer early

I’ve heard people say that they don’t want to get genetic testing because there’s no way to prevent hereditary cancer, therefore it’s better not to know. But that couldn’t be further from the truth.

About 90% of people whose colorectal cancer is discovered and treated early are still alive five years later. The recommended age to begin screening for colorectal cancer for the average person is 45. For those with Lynch syndrome, that’s far too late.

Many people with Lynch syndrome are first diagnosed with cancer in their 30s or even 20s. I recently spoke with a father, Junius Nottingham, who lost his 30-year-old son to aggressive colorectal and liver cancer. If his son, Jeremy, had known he had Lynch syndrome, his healthcare providers likely would have referred him for regular colonoscopies beginning in his early 20s — a decision that might have saved his life. The same goes for my brother, who ultimately died from colorectal cancer last year at the age of 52.

Women have additional options to safeguard their health. Lynch syndrome is linked to a 15-55% chance of developing endometrial cancer, and doctors typically recommend that patients have their ovaries and uterus removed by age 35. When I discovered I had Lynch syndrome, I was already 15 years past that deadline, so I scheduled the procedure right away — and it wasn’t a moment too soon. When the surgeons looked at my uterus, they found that I already had stage 1 endometrial cancer. Fortunately, I didn’t need further treatment because the cancer was removed at such an early stage — before it had the opportunity to spread.

Could I be at increased risk?

If you or a close relative has been diagnosed with colorectal or endometrial cancer — especially at a younger-than-average age — it could be a sign that Lynch syndrome runs in your family. If you’re wondering whether you should get tested, FORCE (Facing Our Risk of Hereditary Cancer Empowered) provides up-to-date information and a list of questions to help you decide whether genetic counseling makes sense for you.

If you’re not at risk, but you know someone who might be, please talk to them about Lynch syndrome and the importance of knowing their family’s cancer history. March is Colorectal Cancer Awareness Month, so it’s the perfect time to share knowledge that could save someone’s life.

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