Lynch syndrome and colon cancer risk: One nurse’s story

April 6, 2017  //  FOUND IN: Our Employees,

Lisa Sylvest is a cancer survivor with a long family history of the disease. The now-retired Michigan Medicine nurse is also a detective.

She never met her father’s parents but knew they lived in Denmark with their other son and daughter. As a child, Sylvest was told only that her grandmother died of a “female” cancer at age 54. When Sylvest was in high school, her uncle died of brain cancer, also at 54.

Time passed, she entered nursing school and her aunt developed endometrial cancer.

Her father, Karl, was diagnosed with advanced colon cancer at age 68 and Sylvest herself — by then a gastroenterology nurse — was diagnosed with endometrial cancer in 1998.

At that point, Sylvest suspected that the prevalence of cancer in her family was connected in some way.

An inherited link

Eight years later, in 2006, Sylvest attended Michigan Medicine Grand Rounds — a weekly presentation to medical staff — on a genetic mutation known as Lynch syndrome. The information persuaded Sylvest to get genetic testing for herself and to encourage her family on both sides of the Atlantic to do the same.

“I was told my uncle died of brain cancer, so I didn’t originally connect the dots,” Sylvest explained. “It wasn’t until years later that I learned my uncle actually died of colon cancer that metastasized to the brain.”

Today, doctors know that Lynch syndrome greatly increases the chances of developing colon and other cancers, including endometrial cancer, earlier in life than what is considered typical.

The most common hereditary colon cancer condition — present in 1 of every 300 people — Lynch syndrome is responsible for 2.5 percent of colon cancers.

Which is why those with Lynch syndrome should begin screenings and annual colonoscopies starting in their early 20s, experts say (average-risk patients, by comparison, needn’t do so until age 50).

Family ties

Both Sylvest and her sister tested positive for the condition. Her brother was negative and younger sister chose not to be tested.

“When my sister saw the test result, she went straight to her gynecologist, and thank goodness she did, because she had endometrial cancer. Today she is alive and cancer-free,” Sylvest said.

The two siblings traveled to Denmark in 2010 for a family meeting with their cousins to discuss genetic testing for Lynch syndrome. As a result, two cousins tested positive and one tested negative. Two other cousins have not been tested to date.

Spreading the word

The experience has given the steadfast detective gratitude and perspective.

“It has struck me that my family is very lucky,” said Sylvest, who, after the trip, attended a Lynch syndrome symposium held annually at the Mayo Clinic in Rochester, Minnesota, where she met others in the same situation.

It also motivated her to get the word out by organizing a seminar for Lynch syndrome patients in 2014.

And the dialogue continues: A support group for Lynch syndrome and familial adenomal polyposis (FAP) patients will meet on Thursday, April 20 at the Cancer Support Community of Greater Ann Arbor. For more information or to RSVP to the event, call 734-975-2500.

Sylvest said she’s glad to support the effort: “Families, community practitioners and the general public need to understand that Lynch is more than a genetic disorder that can lead to colon, rectal or endometrial cancer. It is complex, and we learn more about it every year.”

For more stories like this one, check out the Michigan Health Blog.