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. The woman she shared a hospital room with -- who'd had a similar surgery -- did not survive.
"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?" the 51-year-old 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.
Roughly one in 370 people has Lynch syndrome, according to Lynch Syndrome International, an organization dedicated to helping people with Lynch syndrome and those who treat them. It's 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."
Fisher's battle with bowel cancer began more than 20 years ago. She said she has suffered unbelievable tragedy and found inspiration from some likely and unlikely places: her sons, a stray dog, and Sharon Osbourne.
'I Was Very Numb. I Couldn't Think'
Fisher's battle with bowel cancer began when she was in her early 30s. Long before she knew about her own susceptibility, her uncle got sick. He died in 1982.
Shortly after, her father got sick. She held his hand as he died from bowel cancer, almost exactly one year after his brother died.
Then, 10 years later, Fisher's brother Mickey was diagnosed with bowel cancer at 28. He was dead at 30, leaving behind two children and a pregnant wife.
"After Mickey died, I had a bit of a nervous breakdown," she admits.
Even though bowel cancer had taken three of her closest blood relatives, doctors "still didn't make a connection." Back then, few believed that bowel cancer was genetic.
One person who did was Dr. Lynch. Today, he is widely regarded as one of the fathers of cancer genetics. But when he discovered hereditary non-polyposis colorectal cancer -- known today as Lynch syndrome -- few believed him. He wanted his discovery to encourage people with family histories of cancer to get checked, but many experts argued against any link between family history and cancer.
March 22 is now recognized as Lynch Syndrome awareness day.