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.
Decades after Lynch’s discovery, the Fishers were still not advised just how hereditary cancer could be, Lynne Fisher says. So the family had to suffer many more tragedies.
In 1997, her mother died of bowel cancer at 68. In 2006, her brother Clyve had a colonoscopy in August. He was given a clean bill of health. By the next April, he was dead.
“If they’d made this connection long ago, maybe they could have saved my brother’s life,” Fisher says.
Before he died, doctors finally realized that Clyve and much of the family had inherited Lynch syndrome. And, as he lay dying, said he Clyve was determined to change the family’s future. “He turned to me and said, ‘I’m going to die, but you need to get yourself tested,'” Lynne remembers. “If you don’t,” he continued, “you could die of bowel cancer.”
But knowing you should get tested for a gene that, given her history, would effectively sentence her to death is different than having the strength to get tested. At first, Fisher didn’t want to know. She felt it was her “fate” to die of colon cancer.
“I thought it was best if you don’t know and just get on with life,” she says.”Because life is worth living, not worth worrying all the time. There’s a world outside. You have to live.”
Her doctors insisted. And eventually, Fisher realized she must have the test — so her sons would know if they had to worry.
Two of her other siblings took the test and came back negative. Which made her positive result all the more shocking.
“I was shaken,” she says. “I was very numb. I couldn’t think.”
Her doctors encouraged her to have her colon removed, a surgery she feared and initially resisted. To this day, she says she believes she would not have gone through with it except for a vacation and a chance encounter with an abandoned dog.
“My husband at the time, who was very supportive, said, ‘Let’s go to Turkey for 2 weeks and we’ll talk about it in Turkey,” she recalls.
While there, they stumbled on an abandoned puppy that had been beaten, his tail cut off and his skin burned by lit cigarette stubs. Fisher spent much of her vacation forgetting about her own issues and nursing the dog back to life.
“We brought the dog back to this country. We brought him home,” she says. “And it dawned on me when I got back and the dog came back with us — and he’s a beautiful collie — that I had just saved his life so that I needed to stay alive, to keep on looking after him.”
Fisher found a second inspiration: she read that one of her idols had also contracted bowel cancer — and had removed a portion of her bowel to fight it.
In 2003, Sharon Osbourne — badgered by her husband Ozzy — underwent a colonoscopy that revealed a very small cancer toward the bottom of her colon. After her surgery she had chemotherapy and has fully recovered, honored for her willingness to publicly discuss her illness and raise awareness for bowel cancer.
“I die my hair like her, I love that lady,” Lynne says of Osbourne. “I thought, if she went through it — I’ll go through it.”
Despite Fisher’s success story, prophylactic subtotal colectomy is still seen by many doctors as a last resort.
ABC News contacted Fisher through beatingbowelcancer.org, a British charity dedicated to improving bowel cancer awareness and increasing early diagnoses. The charity also recommended speaking with Dr. Kevin Monahan of the Family History of Bowel Cancer Clinic at West Middlesex University Hospital.
Monahan argued that many doctors do not recommend the surgery because of the side effects that Lynne suffered and because preventative medicine can help fight Lynch syndrome. “Screening with colonoscopy is highly effective,” he told ABC News. “Probably one of the most effective screening tests in all kinds of cancer.”
He also cited a recent study in the United Kingdom that showed daily aspirin can reduce people’s chances of developing colon cancer by as much as 50 percent.
Even Lynch himself admits the surgery is not widely supported.
“There was a lot of reticence by physicians to do that procedure,” he said. “It’s still not fully accepted.”
But it is getting more common, and he knows some patients “desperately want to talk about it. The doctors need to listen to them.”
Lynne says she was never really given an option — her doctor said if she didn’t have it, they would soon be treating her for cancer.
Today, despite all the side effects, she doesn’t regret having the surgery.
“You have to go through that dark tunnel,” she says. “At least I didn’t have the cancer. And that’s what I have to keep remembering.”
She believes the good health she is enjoying because of her surgery means her brother Clyve, who urged her to have the test for Lynch Syndrome, didn’t die in vain.
“I’m giving it a good bash,” she says. “If Sharon Osbourne can fight it, I can fight it.”
- Woman Removes Colon to Prevent Cancer (abcnews.go.com)
- Lynch Syndrome: Screening or Surgery to Prevent Gynaecological Cancers? (familyhistorybowelcancer.wordpress.com)