SALT LAKE CITY — Sisters Emily Scalley and Lisa Callister have a lot of things to celebrate in their close-knit family. But Lynch syndrome isn't one of them.
"Lynch syndrome causes cancer all over: brain, skin, stomach, liver," said Scalley who lives in Salt Lake City. Callister added, "A bad gene."
Callister, 44, went in for a routine physical and colonoscopy in 2012. "They came back and said they found a mass," she said. It was colorectal cancer. Her tumor had been growing for at least five years.
Because of the diagnosis and a strong family history, both sisters got tested for a hereditary syndrome that increases the risk of cancer.
Dr. Jewel Samadder of the Huntsman Cancer Institute said, "Lynch syndrome increases your risk of developing colorectal cancer to nearly 80 percent over your lifetime. It also has increased risks for uterine cancer in women, ovarian cancer, small bowel, stomach and some other rare cancers.
Since colon cancer is preventable and highly treatable if caught in its early stages, patients who test positive for Lynch syndrome like Scalley and Callister get regular colonoscopies.
"This is a colonoscope," Samadder said, pointing to a long thin instrument. "It's a telescope with high-definition imaging. It navigates through your bowel while you're sedated, and we can remove polyps and fine tumors." That prevents the growths from turning into cancer, he said.
The cancer "moonshot" initiative led by Vice President Joe Biden aims to prevent cancer and detect it at an early stage. They are focusing on awareness and testing for Lynch syndrome to tackle cancer early.
"It's so preventable, colon cancer," Callister said, "especially if you catch it early. It's so preventable."
Close to 1 million people in the United States may have the gene but don't know it. Children of people with Lynch syndrome have a 50-50 chance of having it.
The sisters' dad passed away May 2010 from liver cancer after a false negative on a test for the syndrome. Scalley said, "Unfortunately, he was the 1 percent or less that this test was wrong on."
But now that they know they have the gene, they're protecting themselves and the next generation. At 41, Scalley has had four colonoscopies, and she and Callister are making sure their kids stay healthy.
"My son has the gene," Callister said. "We did test him, so he had his first colonoscopy at age 16. We try to make it as light as you can. It's not funny, but I think we even mentioned it's like going to the dentists to get your teeth cleaned but they clean your bum."
Fortunately, doctors caught Callister's cancer before it had spread.
"This knowledge is kind of the difference between my story and Lisa's," Scalley said. "Unfortunately she had to go through all that because we just didn't know."
And now Callister's experience is saving other family members.
If you're concerned about Lynch syndrome, talk with a genetic counselor about testing.
Email: hsimonsen@deseretnews.com