If Jill Chang had known the dangers that lurked within her genes years earlier, she could have taken steps to prevent a second cancer fight.
Chang, 42, of Perry Township, was diagnosed with colon cancer at age 30.
Within five weeks of her diagnosis, her brother found out he had colon cancer, too.
Their mother also battled colon cancer, breast cancer and eventually would die from treatment complications for lung cancer.
But it wasn’t until Chang discovered she had endometrial cancer in 2011 that she underwent genetic testing, which showed she had Lynch syndrome. The genetic mutation is linked to colon, endometrial and other cancers.
Had she known earlier, she said, she could have had a hysterectomy to prevent her endometrial cancer diagnosis.
“I wish I would have had that information,” she said. “I went 10 years very vulnerable.”
A new statewide study is trying to make sure others diagnosed with colon cancer get screened for the Lynch syndrome mutation.
The Ohio State University Comprehensive Cancer Center is leading the effort to recruit at least 2,000 patients diagnosed with colorectal cancer from Jan. 1, 2013, through the end of this year for the study.
Participants in the Ohio Colorectal Cancer Prevention Initiative agree to have their tumor tested at no cost to them to screen for the Lynch syndrome gene mutation, said Heather Hampel, a cancer genetic counselor at the Ohio State University Comprehensive Cancer Center who is heading the study.
If the tumor screening shows a possibility of Lynch syndrome, participants are offered free genetic testing and counseling, she said. Parents, siblings and children of patients who test positive for Lynch syndrome also are eligible for free genetic testing and counseling.
Children whose parents have Lynch syndrome have a 50 percent chance of inheriting the mutation.
Free genetic testing also will be offered to patients diagnosed with colon cancer before age 50 regardless of the results of their tumor screening to determine whether they might have other genetic mutations, Hampel said.
Lynch syndrome patients have as much as an 80 percent chance of developing colorectal cancer, according to the nonprofit advocacy group Lynch Syndrome International. For women with Lynch syndrome, the risk of having endometrial cancer is about 60 percent.
The gene mutation also increases the risk for other cancers.
A previous OSU study showed one out of 35 colon cancer patients had Lynch syndrome.
People who find out they’re at higher risk can be counseled to undergo earlier or more frequent cancer screenings, Hampel said.
“This is cost effective and it saves lives,” she said.
The initiative is paying for the cost of each tumor screening, estimated at $500 to $1,000, as well as the follow-up genetic testing, averaging $2,000, Hampel said. Insurers usually cover the screening and genetic tests.
The study allows hospitals without genetic counseling to provide testing and then work with other programs to offer the counseling services, Hampel said. In the Akron area, for example, Akron Children’s Hospital provides the genetic counseling.
“By teaming up together and working together, we can do it,” she said. “We can screen all of the cases and save lives.”
Participating Northeast Ohio hospitals include Akron General Medical Center, Aultman Hospital in Canton, Fairview Hospital in Cleveland, the Cleveland Clinic, Hillcrest Hospital in Mayfield Heights, Mercy Medical Center in Canton, MetroHealth System in Cleveland, Robinson Memorial Hospital in Ravenna, Summa Akron City-St. Thomas hospitals, Summa Barberton Hospital and Summa Western Reserve Hospital in Cuyahoga Falls.
Chang said she’s pleased the genetic screening and testing for Lynch syndrome is being offered statewide.
She helped lead an effort to have March 22 designated as “Lynch Syndrome Hereditary Cancer Public Awareness Day” in Ohio and is planning a walk beginning at 8 a.m. that day in Lakewood.
“It’s all about advocacy,” she said. “It’s to raise awareness.”
For information about the Ohio Colorectal Cancer Prevention Initiative Study, call 888-329-1654.
To learn more about the upcoming Lynch syndrome awareness walk, search “Lynch Syndrome Walk for Courage” on Facebook.
Cheryl Powell can be reached at 330-996-3902 or cpowell@thebeaconjournal.com. Follow Powell on Twitter at twitter.com/CherylPowellABJ.