Her family kept getting cancer. At 33, a saliva test explained why.

• Michelle York, 43, had family history of multiple cancers on her mom’s side.
• York tested positive for Lynch syndrome, an underdiagnosed, symptomless condition that increases cancer risk.
• York and her other family members who tested positive get more frequent cancer screenings.

On her mom’s side, Michelle York has a long family history of cancer.

Her great-grandmother died from colon cancer. Her grandfather had stomach and brain cancer, and his sisters died from liver, ovarian, and breast cancer, respectively. Her mother’s cousin died from pancreatic cancer.

Then, when York was 33, her mother came across a possible explanation: Lynch syndrome.

An inherited genetic mutation, Lynch syndrome is underdiagnosed, symptomless, and increases the risk of cancers, including colorectal, uterine, stomach, ovarian, pancreatic, among others. With colon cancer in particular, it can increase lifetime risk as high as 80%, and is sometimes associated with more aggressive forms of the cancer. About 1 in 300 Americans is estimated to have Lynch syndrome, though many don’t find out until after they’ve been diagnosed with cancer.

York’s mother, who was a nurse at the time and had read about Lynch through her work, decided to get tested. “She thought: ‘Well, what if I do have this and what if my daughter has this?'” York, now a 43-year-old content creator in Los Angeles, told Business Insider.

At the time, York was also dealing with pelvic pain caused by complex ovarian cysts — cysts containing either solid tissue or irregularities that could mask growing tumors. If she also had Lynch, her cysts would warrant an even closer look, given her heightened ovarian cancer risk.

Both York and her mom tested positive for Lynch, as did both of York’s siblings and other family members on her mother’s side. Now, they get annual screenings to catch any potential cancers earlier.

“In the beginning, it was a little bit more anxiety-inducing,” York said. But after about a decade of regular screenings, she feels reassured that she’s lowering her risk of developing late-stage cancer. “I think knowledge is power — now, it almost feels comforting because I know that I started doing this young.”

A quick saliva test

There are three ways to get screened for Lynch syndrome: a saliva, cheek swab, or blood test, with blood yielding higher-quality DNA samples.

After York’s mother got tested, York and her two siblings were all offered the saliva test by their physician. “I spit in a tube — it was a very easy test,” York said. Because her mom had already tested positive for Lynch syndrome, she said her insurance covered the test.

All three siblings tested positive, as did York’s aunt, uncle, and cousin on her mom’s side. (York’s father did not take the test because he doesn’t have a family history of cancer on his side).

Afterward, York and her siblings met with a genetic counselor who explained which cancers they were predisposed to and the average population age for developing them.

At first, the information made them nervous, especially given how young they were. York was 33, her sister was 31, and her brother was 22.

“Does this mean I’m going to get cancer at a young age?” York said. “Does this mean every time I don’t feel well, I’m going to immediately think I have cancer?”

At the same time, she understood that her family members all knowing their risks could prevent serious, surprise cancer diagnoses later. Her mother, in particular, has had precancerous polyps removed during multiple annual colonoscopies.

“None of us have had cancer yet, but we’ve had lots of scares,” York said.

She gets annual colonoscopies and other cancer screenings

After getting diagnosed with Lynch, York and her family members started getting annual colonoscopies, regardless of their age.

At first, York thought she could at least go every other year, since the common recommendation for people with a family history of colon cancer is getting screened every five years. But because colon cancer can develop so rapidly in people with Lynch, her doctor advised annual screenings.

“Doing it every year kind of sucks — it’s really just the preparation for the colonoscopy,” York said, which involves fasting the night before and drinking laxatives.

For her complex ovarian cysts, York started seeing a gynecologist-oncologist and would get each cyst reexamined every 3 months. Eventually, due to complications with her cysts, York ended up getting a hysterectomy and oophorectomy, removing her uterus and both ovaries, thus reducing her ovarian and uterine cancer risks to practically zero.

Because of her specific Lynch variant, York also gets annual skin cancer screenings and annual mammograms, as some newer studies indicate that her mutation is linked to a slightly elevated risk of developing breast cancer. (For average-risk women over 40, the general breast cancer screening recommendation is getting one every two years.)

She said having a Lynch diagnosis also made it easy to get screenings like colonoscopies covered by her insurance plan. Without a family history of colon cancer, opting for a colonoscopy under the age of 45 can cost hundreds — even thousands — of dollars out of pocket.

Prior to her hysterectomy, she said a CT scan was initially denied by her insurance because it wasn’t deemed “medically necessary.” The CT scans were later approved by her insurance after her doctor told the insurance company that York had Lynch.

“The Lynch diagnosis absolutely does help, in that respect,” York said.

She believes doctors listen to her more

Some young people who get diagnosed with colon cancer recall feeling dismissed by doctors because of their age, lack of family history, or overall health.

York said that having Lynch changed how her doctors responded to her pain, particularly when she was still dealing with ovarian cysts. “I think people take you a little bit more seriously, people look a little closer,” she said. “If there is a pain or a lump, you are treated differently because of Lynch syndrome.”

Lynch syndrome is still rare and only accounts for about 2% to 5% of all colorectal cancer cases. Still, York says Lynch immediately comes to mind when she hears of another young colon cancer case.

“My first thought is ‘I wonder if they’ve been tested for Lynch,'” she said. Current guidance recommends all newly diagnosed colon cancer tumors to be screened for signs of DNA instability that could point to Lynch syndrome, with patients recommended to undergo Lynch syndrome screening if the results come back positive.

Because Lynch syndrome isn’t widely spoken about, she occasionally shares her story on her TikTok page to raise awareness. She also wants her two children, ages 17 and 14, to test for Lynch once they each turn 18, as they can begin cancer surveillance if they test positive.

“It’s scary when you first find out that you have a genetic mutation that predisposes you to cancer,” she said. “But at the end of the day, knowing that and taking those precautions could ultimately save your life.”