If you look at new research and health updates any day of the week, you’re likely to find news about increasing cancer rates. This is especially true for certain types of cancer, such as colorectal cancer (also known as colon cancer). Colorectal cancer is becoming more and more common in young people; notable celebrities James Van Der Beek and Chadwick Boseman both died of the disease before they were 50.
The reason for the rise in colon cancer cases in younger adults is largely unknown, although low-fiber diets and a sedentary lifestyle are thought to be factors. However, the contributing factors are multifaceted, and scientists are discovering more potential reasons for the increase in colon cancer diagnoses.
One of those possible factors is something called Lynch syndrome, a genetic disorder that is linked to a higher risk of numerous cancers, including colon cancer. It’s a condition most people likely haven’t heard much about, despite the fact that it’s prevalent.
“Lynch syndrome is the most common hereditary cause of colorectal cancer [and] uterine cancer,” said Dr. Bryson Katona, the executive director of the King Center for Lynch Syndrome at Penn Medicine. Someone with Lynch syndrome is more likely to develop certain types of cancer, including colorectal, uterine, pancreatic and stomach, before age 50.
“There are five different genes that can cause Lynch syndrome, and people that have Lynch syndrome have a genetic defect in one of those genes that they’re essentially born with,” Katona explained.
“It’s not a syndrome that skips generations, so it goes from grandparent to parent to child, but it only has about a 50% chance of affecting each member of a subsequent generation,” Katona continued. For example, if a father with Lynch syndrome has a daughter, that daughter has a 50% risk of also having Lynch syndrome.
HuffPost spoke with Katona and other experts about Lynch syndrome. Here’s what you need to know:
Lynch syndrome is more common than other hereditary cancer syndromes like the BRCA mutation.
Lynch syndrome is not as well-known as the BRCA mutation, which is a genetic mutation that causes people to have a higher chance of developing cancers, including breast cancer and ovarian cancer. But Lynch syndrome is actually more prevalent.
“We think Lynch syndrome impacts about 1 in 300 people, which actually makes it more common than BRCA,” Katona explained.
To put that into perspective, it’s estimated “that about 1 in 300 people in the U.S. is a doctor, and 1 in 300 people is a lawyer,” he said. “So, think about how many doctors or lawyers you know, and you probably know that many people with Lynch syndrome as well.”
For comparison, it’s estimated that the BRCA mutation impacts about 1 in 400 people, although certain populations, such as Ashkenazi Jewish people, are impacted at a higher rate.
“Most people who have BRCA in the family, they know about it,” said Dr. Yuri Fesko, an oncologist and the chief medical officer for Quest Diagnostics. “The issue is that Lynch is not as well-publicized, and so a lot of people just don’t even know they’ve got it.”
“Lynch syndrome impacts all races and all ethnicities as well,” Katona said.
Sorrasak Jar Tinyo via Getty Images
Lynch syndrome doesn’t have any outward-facing symptoms, so many people don’t know they have it.
Katona said there are more than 1 million Americans living with Lynch syndrome, but most of them don’t know “because they haven’t had the genetic testing for it.”
“There hasn’t been this celebrity or pop culture association with [Lynch syndrome]. In the BRCA space, especially with Angelina Jolie and her experience with it, that brought so much attention to BRCA,” Katona explained.
After Jolie revealed she had the BRCA genetic mutation in an op-ed in The New York Times in 2013, there was an increased demand for BRCA genetic testing. Since then, other celebrities, like Christina Applegate, have announced they’re BRCA-positive. (It’s important to note that men can also be BRCA-positive.)
This hasn’t happened with Lynch syndrome.
“I think also the cancers that [Lynch syndrome] increases risk for may be cancers that are less talked-about,” Katona said. “Women are very strong advocates for themselves and for breast cancer research and breast cancer treatment for those affected. But I think … with colorectal cancer, it tends to be a cancer that people don’t want to talk about in their families.”
Since colorectal cancer is the main cancer that impacts men and women with Lynch syndrome, it’s likely that this unwillingness to talk about colorectal cancer hampers knowledge about Lynch syndrome, he noted.
As with BRCA, you may not even know you have Lynch syndrome if you don’t get tested for it. The genetic disorder doesn’t have any outward-facing symptoms; many people don’t discover they have it until after cancer develops, but many people don’t even get tested then.
If you have a personal or family history of colon cancer and certain other cancers, you should consider genetic testing for Lynch syndrome.
Certain people should talk to their doctor about getting tested for Lynch syndrome, both experts said. This includes those with a personal or family history of developing Lynch-syndrome-related cancers — colorectal, uterine, pancreatic, prostate, stomach, ovarian — at a younger age than 50.
For example, if your grandpa, mom, uncle or cousin had one of these cancers before they turned 50, that should trigger a conversation with your doctor, Fesko said.
“We do see a lot of hesitancy toward genetic testing,” Katona noted. Some people worry they’ll feel burdened by knowing this information, while others think genetic testing is very expensive.
However, Katona stressed that this isn’t the case. “Genetic testing, it’s a clinical test … oftentimes covered by insurance nowadays, especially with appropriate family histories.” Genetic testing is also an easy process; it can be done via a blood or saliva sample, Katona said.
Knowing you have Lynch syndrome can empower you to remain vigilant about your health. “Having that knowledge ahead of time is incredibly powerful to let you take proactive and preventive steps to reduce your cancer risk moving forward,” Katona noted.
With a Lynch syndrome diagnosis, you’ll likely be eligible for earlier cancer screenings and additional cancer testing procedures. There is no specific treatment for Lynch syndrome, but there are potential screenings and treatments for the cancers it causes.
Not everyone with Lynch syndrome will develop cancer, but the likelihood is higher than for someone without the syndrome.
“This is not a death sentence,” Fesko said. “There are programs that are designed to help patients that are known to have this disorder get screened appropriately with a more intensive screening program [and] to try to provide them with a totally normal lifespan.”
Just as people with the BRCA genetic mutation undergo earlier screenings (for example, mammograms and specialized breast cancer screenings for BRCA-positive women), people with Lynch syndrome receive more tailored care so that any cancer that develops can be caught and treated early. It’s important to chat with your physician about testing and your options.