25-year-old gives up stomach to avoid cancer

EDWARDS, Ill. — At 6 feet, 4 inches tall and 250 pounds, Malcolm Linstead was built like a brick wall: Strong. Tall. Able to overcome just about anything.

But by the time stomach cancer decimated his body, he was too weak to get out of the car to greet his son, Camden, at the airport. Not even a big smile could hide his new skeleton-like appearance.

“I wasn't able to say anything,” Camden recalled. “I just started crying.”

What Camden Linstead of Edwards, Ill., didn't know at the time is that he was likely headed for the same fate — all because of a mutation in the gene CDH1. People who possess it are predisposed to a deadly type of stomach cancer called hereditary diffuse gastric cancer. Most of Camden's father's side of the family suffers from the mutation.

To avoid developing stomach cancer, Camden took drastic measures: He had doctors surgically remove his stomach.

Now the 25-year-old is looking to raise money for others like him by walking a 220-mile, 14-day path from coast to coast in England with his uncle — who also is without a stomach — and half brother, Christopher Lance, 16. They start their walk last Friday.

The money they raise will go toward the nonprofit organization No Stomach For Cancer, which provides emotional and physical support to families of people who suffer from hereditary diffuse gastric cancer.

The CDH1 mutation already has taken the lives of Camden's father, an aunt, a grandmother and a great-grandmother. Besides Camden, a brother, an uncle, an aunt and a cousin all have had the same procedure.

The second anniversary of Malcolm Linstead's death fell on Saturday, the second day of the walk. Camden keeps a reminder of his father, who died at age 60, in his chest pocket.

“I'm taking a picture of him with me,” he said, “so he can kind of do the walk with me, too.”

In bodies without a stomach, food travels from the esophagus into the small intestine, both of which are attached through surgery. The surgery causes rapid weight loss and forces patients to eat in smaller quantities for the rest of their lives.

Without the procedure, researchers estimate people with the CDH1 mutation have at least an 80 percent chance of developing cancer. And since it's genetic, it can easily go down family lines.

“Your family could just be wiped out,” said Karen Chelcun Schreiber, founder of No Stomach for Cancer, which has discovered about 30 families with the CDH1 mutation since 2008.

The only way to eliminate the chance of cancer is to remove the stomach. For Camden's family, that wasn't easy to accept. His mother, Carolyn Lance, hated the idea. Then in 2010, about three days before his scheduled surgery, Camden's aunt died of stomach cancer.

Her death established a sense of calm in the family about Camden's stomach removal procedure.

“This was a decision that had to be made,” said Lance, 53, of Edwards. “He had to go through this.”

A day after the procedure, Camden said he was in so much pain that he questioned what he had done. Completely drained of energy, he lost 45 pounds in two weeks.

But the procedure, which left the 2008 Bradley University grad's abdomen with a 10-inch scar, likely saved his life. Though Camden was healthy when he underwent the surgery, doctors found cancer forming in his removed stomach.

These days, he's slowly worked his way back up to full meals, though staying clear of red meat since it is difficult to digest.

For Camden's uncle, Paul Linstead, life would never be the same after 1961. His mother had the CDH1 mutation, but without genetic testing it was impossible for her to know.

Seven months into what would be her last pregnancy, she was diagnosed with stomach cancer and faced a terrifying decision: Take medication that would ultimately kill the baby, or risk her own life by having the baby and not taking medications.

“She wouldn't terminate her pregnancy,” Paul said. “She went forward.”

His mother gave birth in May that year and died nearly six months later, on Nov. 23, 1961. Paul, only 11 at the time, was devastated. Not only for himself but for his newborn brother as well.

“That poor bugger, when he came into this world he lost his mother and he never knew his mother,” said Paul, now 60, on the phone from his home in Barnsley, England.

Almost half a century later, Paul discovered that he had the same gene mutation as his mother. And in November 2009, he and his sister's son both underwent surgery on the same day to remove their stomachs.

A physical guy before the surgery, Paul no longer runs and must closely watch what he eats. He acknowledges that the walk across England — which could put the trio through torrential downpours, steep hills, cliffs and fog — will quickly deplete their energies.

But their message won't go unrecognized. Along the way, Paul plans to pass out leaflets about CDH1.

“It's my job,” he said, “to go and pass this message.”