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DECATUR, Ill. (AP) — The Wortmans knew cancer ran in their family, but it wasn't until Cindy Betts was diagnosed with colon cancer at age 48, then stomach cancer and liver cancer each independent of the other that they knew why. A geneticist found she had inherited a rare genetic predisposition from her father for certain cancers called Lynch Syndrome.
Since Betts was diagnosed in 2012, almost all of the family had blood drawn to be tested for the genetic mutation. Betts died September 2013 after fighting cancer for 12 years, but through her, the family learned that five of seven siblings carry the gene. Four have already had cancer. Their sister, Cathy Lymer, was diagnosed with stomach cancer at age 52 and died in 2009.
Many in the next generation of Wortmans have also been diagnosed since children have a 50/50 chance of getting it from a parent with Lynch. The youngest don't know, or haven't been tested. By Mike Wortman's count of the paternal side, 13 total have tested positive.
"After we found out about Lynch, I looked," said Wortman, who had colon cancer. "My grandfather died in his 40s and he had colon cancer."
Illinois is one of more than two dozen states raising awareness March 22 for Lynch Syndrome Day Hereditary Cancer Public Awareness Day.
"If (Cindy) was here, she'd be going around to doctor's offices in March telling people," Mike Wortman said.
Lynch Syndrome makes a person more likely to develop colon or endometrial cancers as well as others at a higher rate and much younger age.
"It answered a lot of questions about why we had so much cancer in the family," said Tim Wortman Sr. who at age 54 has stage four glioblastoma brain cancer.
Their brother, David Wortman, also tested positive for Lynch; however, he hasn't developed cancer yet.
"Awareness is the key to this, really. Our sister Cathy would still be with us, if 10 years ago we knew what we had, and that's the key," said David Wortman who lives in Tennessee. "There's no cure, you just have to be diligent about your health screening."
He serves on the board of directors for Lynch Syndrome International to continue the fight to raise awareness for his family. One of his daughters tested positive, and others who have Lynch and don't know. The group's mission is to raise awareness in the public and medical professionals and provide support for families.
"Here, we had three siblings in their 50s that came down with cancer, thank goodness for the oncologist paying attention," David Wortman said.
And that is how the syndrome was originally discovered by Dr. Henry T. Lynch. His hereditary cancer research in the 1960s involved delving in the medical history of two families.
Dr. James L. Wade III, medical oncologist and founder of Cancer Care Specialists of Central Illinois, said that same practice applies to modern medicine.
"Even today in 2015 with computers, listening to your patients is so important, it was him hearing about these families and mapping out histories he began to see this inherited condition," Wade said.
Of the nearly 200 colon cancer patients the center treats every year, Wade estimates one or two have risk factors for Lynch Syndrome.
By using a point system based on age and the types of cancer called the Amsterdam criteria, Wade said doctors are able to see if a patient is at risk and should have a genetic test. Colon cancer in Lynch patients also has different features which can indicate more testing is needed.
Wade said treatments for cancer patients with Lynch Syndrome is mostly the same. The risk for the cancer returning is higher so surgeons may remove more of the affected area, but it's less likely to spread to other parts of the body.
"Their outlook compared to the other patients is a little better," Wade said. "We need to tailor our treatments keeping that in mind."
Lynch has been hard on the Wortman family, waiting for results not only for themselves, but also their children. Mike Wortman said the worst day of his life was when he found out all three of his children tested positive.
"Now when my son gets sick, I wonder if it's cancer," he said.
However, now the family knows they are able to be proactive with more frequent exams than usually recommended.
"We can't take the Lynch Syndrome away from someone, I think that will come in time with the ability to fix these genetic defects, presently our best approach is to look at these patients at every one or two or three years," Wade said.
Source: (Decatur) Herald & Review, http://bit.ly/1x3u5mj
Information from: Herald & Review, http://www.herald-review.com
This is an Illinois Exchange story offered by the (Decatur) Herald & Review.
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