It wasn’t a question of if, but when, for Mark Allen.
Having inherited a rare mutated gene for stomach cancer, he had a 75 percent chance of developing it. He didn’t second-guess his decision. Allen and 10 of his cousins decided to have their stomachs removed.
Undetected by previous scans and tests, surgeons found cancer cells, waiting to grow and multiply, when Allen’s organ was removed Feb. 14, 2005.
Allen is a soft-spoken, behind-the-scenes electronics technologist in the Department of Communication Sciences and Disorders in the School of Allied Health Sciences, where he has worked for 10 years.
His story has unfolded nationwide with The Associated Press, CNN, ABC, NBC and National Public Radio covering what physicians believe is the largest family to undergo surgery to prevent hereditary stomach cancer.
“To find out and actually have the surgery was a relief because we knew we had it and could do something about it,” Allen said.
His older brother David died of stomach cancer in February 2003 within months of diagnosis. After David’s death at age 57, Davi
d’s oncologist in Fort Collins, Colo., suggested the family get genetic testing. Mark Allen’s grandmother, mother and five out of seven aunts and uncles all had died of stomach cancer. Blood tests taken in the last two days of David’s life showed he carried a rare mutated gene, CDH1. Eleven of 19 cousins discovered they carried the flawed gene. One by one, the cousins, who live across the United States and in South Africa, had their stomachs removed.
“For most of us it was not do you get it done but how soon can you get it done?” Allen said. “It was a race against time because it could have developed at any time.”
Mark found out he had the gene in December 2004 and within one week scheduled the gastrectomy. He and cousin Mike Slabaugh of Irving, Texas, were operated on the same day by Dr. Jeff Norton at Stanford University Medical Center in Palo Alto, Calif. Norton previously had operated on four other cousins.
Norton constructed a new, smaller stomach pouch for his patients using intestinal tissue. Initially Allen was restricted to a quarter cup of food at a time as the pouch gradually grew larger. He had to learn to eat smaller, protein and vitamin-rich portions about six or seven times a day. Never a big eater and prone to meal-skipping, Allen had to program himself to eat.
“It’s a different normal,” said Allen, who takes a daily multi-vitamin and gets a vitamin B12 shot once a month to aid absorption and prevent anemia. He weighed 153 pounds prior to surgery and weighs about 130 pounds now.
The family credits Dr. Henry Lynch at Creighton University in Nebraska, who has researched hereditary cancers for more than 30 years and who was originally contacted by Mark Allen’s mother, Betty, before she succumbed to stomach cancer. She was convinced that there was an environmental cause, possibly the use of pesticides, or some other clinical or hereditary problem. But there was no way to prove it at the time. Dr. David Huntsman at the University of British Columbia Cancer Agency eventually found the gene mutation in the family.
Both physicians took a special interest and recently attended a rare Memorial Day family reunion held in Las Vegas. The family has grown closer, even though they live East to West.
Mark Allen grew up in Bucklin, Kan., about 20 miles from Dodge City. He said he couldn’t have gone through everything without his wife of 34 years, Rose, an associate professor and director of the distance education program in ECU Communication Sciences and Disorders.
Faculty, staff and friends including Dr. Gregg Givens, chairman of the department, have gone the extra mile, Rose Allen said. “The week we got back (from the surgery), faculty brought us meals every night. They were so concerned and so supportive.”
Since the media coverage, Mark Allen has answered emails from across the country from families wanting more information. He hopes to spread the word about genetic testing and genetic cancers.
It’s estimated that 100 families worldwide carry the rare mutated gene, but there could be more. In 2003, there were an estimated 22,400 new cases of stomach cancer in the United States and an estimated 12,100 deaths, according to the National Center for Chronic Disease Prevention and Health Promotion.