Mike Slabaugh does not have a stomach. Neither do his 10 cousins.
Growing up, they watched helplessly as a rare hereditary stomach cancer killed their grandmother and some of their parents, aunts and uncles.
Determined to get the better of the cancer, they turned to genetic testing. Upon learning they had inherited their grandmother Golda Bradfield’s flawed gene, they had two options.
Risk the odds that they might not develop cancer, with a 70% chance they would; or have their stomachs removed. The latter would mean a challenging life of eating very little very often.
All the cousins chose the life-changing operation. Doctors say they are the largest family to have preventive surgery to protect themselves from hereditary stomach cancer.
“We’re not only surviving, we’re thriving,” said Mr Slabaugh 16 months after his operation at Stanford University Medical Centre in Palo Alto.
Advances in genetic testing are increasingly giving families with bad genes a chance to see the future, sometimes with the hope of pre-emptive action. People have had stomachs, breasts, ovaries, colons or thyroid glands removed when genetic tests showed they carried a defective gene that gave them a high risk of cancer.
But what about people whose families don’t have these rare, but powerful genetic defects? Experts say that one day, doctors may do DNA tests as routinely as they check cholesterol levels now, spotting disease risks that can be lowered. That day is not here yet, but progress is being made.
“We do not yet have a general DNA test that fits into that category, but we’re headed for it at a pretty good clip,” said Dr Francis Collins, head of the National Human Genome Research Institute.
By 2010, there might be several such tests, along with recommendations to help high-risk people avoid certain diseases, he said.
To come up with a useful DNA mass-screening test, it’s not enough to identify a particular gene variant that raises the risk of a disease, experts said.
For now, “mass screening with DNA testing isn’t quite ready for prime time”, said Dr Ned Calonge, head of the US Preventive Services Task Force, which recommends steps people can take to prevent disease.
The task force recently recommended against routinely testing women for harmful mutations in BRCA genes. Those mutations raise the risk of breast and ovarian cancer. But it endorsed such testing for women whose family histories show certain suggestive patterns of cancer – a situation like stomach cancer in the Bradfield family.
Mr Slabaugh, who lives in Dallas, reunited with his many scattered cousins recently in Las Vegas just two months after the last in the group – Bill Bradfield of Farmington, New Mexico – had his operation. Several had not seen each other for decades while others met for the first time.
They gambled, went to shows and dined in the City of Sin.
“Rather than live in fear, they tackled their genetic destiny head-on,” said Dr David Huntsman of the University of British Columbia, who found the gene mutation in the family.
About 22,000 Americans will be diagnosed with stomach cancer this year and half will die, according to the American Cancer Society.
But the form that runs in the Bradfield family called hereditary diffuse gastric cancer is extremely rare with about 100 families diagnosed worldwide.
The CDH1 gene mutation was first discovered in 1998 in a large New Zealand family with a history of stomach cancer. Those with the mutation have a 70% risk of stomach cancer.
It killed Golda Bradfield in 1960. She passed the faulty gene to seven of her children. Six died of the disease in their 40s and 50s.
The 18 grandchildren learned of the defective gene after one of them, David Allen, died of stomach cancer in 2003. His doctor had sent a blood sample to Dr Huntsman’s lab, which confirmed the genetic mutation.
Soon after, the remaining 17 got tested. Eleven who had the bad gene had surgery.
Mr Slabaugh, haunted by his mother’s death since his teen years, did not hesitate to have the operation. He and five other cousins had it done at Stanford. The other family members had surgery closer to home.
“I wake up every morning and think, ‘This is a free day. I get a bonus today’,” said the 52-year-old marketing executive.
During surgery, doctors removed the entire stomach and surrounding lymph nodes and attached the bottom of the oesophagus to the intestine to create a pouch. Without a stomach, patients typically lose significant weight and must eat smaller meals more often. They can still digest food through the small intestine.
It took about a year for Linda Bradfield, a 55-year-old from Irvine, California, to adjust to her missing stomach.
Initially, she could only eat 800 calories a day and was on a strict bland diet. She gradually added vegetables such as cabbage and lettuce, but still avoids white bread, which she finds tough to digest.
“Life is pretty good without a stomach,” she said.
Before Diane Sindt and her two older sisters had their stomachs taken out, they ate their “last supper” during Thanksgiving. True to their sisterly bond, they scheduled their operations at Stanford on consecutive days in December 2004.
The upside is that Sindt dropped from a size 14 to a size 4 since the surgery. But she has trouble keeping down certain foods like ice cream and tends to shed weight easily if she over-exercises.
To overcome it, Sindt sticks with meat and has replaced running with “power walking”.
“It’s definitely a new normal for us,” said the 51-year-old estate agent from the Sacramento area.
Unlike his other cousins, Bill Bradfield of New Mexico wrestled over what to do. He wondered how his life would change without a stomach. Would he still have enough energy for his demanding job as a mechanic for a natural gas company?
But after watching his other cousins slowly regain parts of their former lives, Mr Bradfield went ahead with the operation at the University of Texas MD Anderson Cancer Centre in March, becoming the last in the family to give up his stomach.
“We’re all going to die of something,” he said, “but I know I won’t die of stomach cancer.”