Having Lynch syndrome is not a guarantee that a person will get a cancer, but we know that the chance is higher.
Emma Herlache, Genetic Counselor, ThedaCare
It’s impossible to change our genes, but with knowledge comes power. In the case of Lynch syndrome, a genetic condition that ups people’s risks for developing colorectal and other types of cancer, that’s especially true.
Colorectal Cancer Awareness Month offers a reminder for everyone to examine their risk for colorectal cancer and to explore options for screening as well as genetic testing, when warranted.
Lynch syndrome puts a person at a higher risk of developing colorectal, uterine, and ovarian cancer, says ThedaCare Genetic Counselor Emma Herlache. It’s also associated with other cancers, including kidney, stomach, bladder, brain, prostate, and pancreatic.
“Having Lynch syndrome is not a guarantee that a person will get a cancer, but we know that the chance is higher,” Herlache says.
Genetic testing is the only way to confirm whether someone has Lynch syndrome.
“What I tell my patients is in genetics, we’re sort of the ‘why’ people,” Herlache says. “We’re trying to answer why somebody got a cancer very young or why there’s a lot of cancer within a family. The goal is to use that information to be proactive for the future.”
Pursuing Genetic Testing
People who are diagnosed with colon cancer or another Lynch syndrome-related cancer before age 50 should consider genetic testing for Lynch syndrome, Herlache says. Some guidelines also suggest anyone with colorectal cancer could consider testing for Lynch syndrome.
Others who should consider testing include:
- People who have a close family member diagnosed before age 50 with a Lynch syndrome-related cancer
- People who have had two Lynch syndrome-related cancers
- People who have three or more family members with a Lynch syndrome-related cancer (at any age)
Important Information
Confirming whether someone has Lynch syndrome can help individuals and their families in several ways, Herlache says. First, it can impact the type of treatment people receive, as those who have Lynch syndrome may respond better to immunotherapy than those who don’t.
Second, because Lynch syndrome increases the risk for multiple types of cancer, making the diagnosis can help guide what kinds of other cancer screenings a person may need, Herlache says.
“Third is if we find a genetic risk factor in that patient, then it has implications for their family members as well,” Herlache says. “A positive genetic test result opens the opportunity for other family members to be tested.”
If those family members have the same inherited risk factor, they may be eligible for earlier and/or more frequent cancer screening as well as other preventive steps, in certain cases.
How to Get Tested
“Often, the best place to start is a discussion with a primary care provider,” Herlache says. “A lot of times that results in a referral to a genetic counselor.”
People also can self-refer to a ThedaCare genetic counselor. Genetic counseling begins with a discussion of an individual’s medical and family history.
“Our purpose is to start to educate and help empower people to decide if genetic testing would be something that would be helpful for them,” Herlache says.
Insurance Coverage
Most health insurances will cover genetic testing for people with a concerning personal or family history of cancer. While laws prevent most health insurers and employers from discriminating against people based on genetic test results, life insurance companies can ask people whether they’ve had genetic testing.
“It doesn’t mean someone will get denied automatically, but sometimes if a person is planning or hoping to get life insurance, they may decide that genetic testing is not right for them at that time,” Herlache says.
Several companies allow individuals to purchase genetic testing online. However, these tests often are not the same as those ordered through a health care provider, Herlache says. Those who do pursue genetic testing through a purchased kit should confirm any findings clinically before they take any action, she continues.
“There are some companies that offer accurate testing and some that don’t,” Herlache says. “But most direct-to-consumer genetic testing is not as comprehensive as what we offer in the clinic.”
Weighing Pros and Cons
The goal of genetic testing is to help prevent disease or at least to catch it in an earlier stage while it’s easier to treat, Herlache says.
“Another benefit would be that you may discover that you didn’t inherit Lynch syndrome,” Herlache says. “Then we know you don’t need that extra screening, and it can take away some of that fear.”
On the flipside, sometimes finding out you have a higher chance of getting cancer leads to anxiety. However, counselors can help provide direction on potential actions people can take.
“You don’t just have to sit with that anxiety,” Herlache says. “The genetic counselor is there to help you work through those concerns and decide what makes sense for you.”
Colorectal Cancer Screening
A colonoscopy is an excellent test because in many cases, physicians can identify pre-cancerous polyps and remove them before they turn into cancer. While other testing options are available, colonoscopy is the best method for people at increased risk, Herlache says.
Guidelines call for the general population to begin colonoscopy screening at age 45 and to repeat it every 10 years through age 75.
For people with a family history of colorectal cancer, doctors may recommend beginning screening earlier. In addition, those individuals may need to repeat screening every five years instead of 10, Herlache says. People with Lynch syndrome may begin colonoscopies as early as age 25 and repeat them every one to two years.
Herlache stresses that genetic counselors are here to provide support and help guide next steps.
“It’s about empowering people with knowledge to make decisions based on their unique needs,” she says.
