(NEW YORK) -- What would you do to reduce the chance of dying of cancer? How far would you go if you had a 70 to 90 percent chance of contracting bowel cancer -- and your uncle, mother, father and two of your brothers had died from it?
Lynne Fisher decided she would do almost anything. So, even though she showed no signs of cancer at all, Fisher, 51, a former mental health worker, agreed to undergo what might sound like a radical surgery: doctors removed nearly her whole colon and rerouted her small intestine to perform the functions of her large intestine.
The side effects were horrific, she said. For a year, Fisher struggled to control her bowel movements. She fought depression, and she hated her large scars and the 28 staples that had been left in her body. Her Multiple Sclerosis returned.
"When you're in it, it's like a dark tunnel," she told ABC News in a long phone conversation about her medical history.
But then, one day, she realized the surgery had helped saved her life. And since then, she's never looked back.
"What's a year out of your life compared to dying?" Fisher said from her home in central England. "I get to watch my dogs grow up, my children grow up, my grandchild, I get to see my cherry blossoms in the tree, I get to see the sun shining in the morning, I get to go on holiday -- I get to see life."
Genes that cause breast cancer have been discussed widely for years. But less well known is Lynch syndrome, the gene mutation that Fisher and her much of her family inherited.
It's unclear how many Americans have Lynch syndrome, but up to 7 percent of colon cancers occur in people with the disease, according to the National Institutes of Health. It's also unclear how many Americans choose to have the surgery that Fisher had: prophylactic subtotal colectomy, which doctors describe as a major surgery that, while elective, can often save lives.
"A person will select the option of sub-total colectomy because the entire colon is at very high risk for cancer," said Dr. Henry Lynch, who discovered Lynch syndrome in the 1960s and is now the chairman of Preventive Medicine and Public Health at Creighton University and the director of Creighton's Hereditary Cancer Center. "Lynch syndrome goes from one generation to the next. And it has an early age of onset in colon cancer."
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