Steve Walsh died of stomach cancer at 46 on Nov. 21, 2006. Four years later to the day, his mother died of colon cancer. Both carried a rare gene mutation that can cause an aggressive form of cancer, and Walsh’s four surviving siblings had little choice but to find out if they carried it, too.
When three of them tested positive, they took a radical step and had their stomachs surgically removed. After watching their brother die a painful premature death, leaving a wife and three children, they didn’t have second thoughts about the surgery.
“We had a pretty good idea of the way things would go. It’s very bad,” says Mike Walsh, who is 48 and lives in Franklin and opted for the surgery.
“The surgery saved our lives,” says Beth Walsh Lambert, 44, who teaches English at Grafton High School and also chose stomach removal, as did sister Kathy Flores of Houston. Their mother, who was 77 and already battling colon cancer, decided against having the surgery.
Whenever people learn that the siblings, who grew up in Millis, elected to have their stomachs removed, they invariably respond: “You did what?”
But Lambert says the decision was easy for them, once they tested positive for the CDH1 mutation that causes hereditary diffuse gastric cancer, a particularly silent, and deadly, cancer. “HDGC is detected late, often stage 4,” she says. “When you have symptoms, it’s too late to do anything.”
With science making continual progress into unraveling genetic mysteries, more families are opting to learn about their risk factors, and taking extraordinary steps to decrease them. The most commonly known are removal of the breasts, ovaries, and uterus for women who carry a gene mutation that can lead to cancers in those organs.
Following actress Angelina Jolie’s announcement in May that she had had a prophylactic double mastectomy because she carries a gene mutation that sharply increases her risk of breast and ovarian cancer, the Walsh siblings decided to share their own cautionary tale.
“No one talks about stomach cancer,” says Lambert. “With breast cancer, the work has saved so many lives. Now we need to do that for stomach cancer.”
People can live without a stomach, which holds, mixes, and breaks down swallowed food before passing it into the small intestines, where most of the digestive process occurs. The procedure differs from the bariatric surgery done on the morbidly obese, in which the stomach is reduced in size with a gastric band or clamp, or a portion of it is removed.
Although life after stomach removal surgery hasn’t been easy, the Walshes say that the decision to do it was: They’d rather live without a stomach than die with one.
Though their pre-surgery tests showed no signs of cancer, once the organs were removed, pre-cancerous cells were found in all three stomachs.
“Because of the diffuse nature of this cancer, it rarely shows up on an endoscopy,” says Lambert. “That’s why they recommend removing the stomach prophylactically.”
Stomach cancer is the second-leading cause of cancer deaths, after lung cancer, in the world. In the United States, more than 21,500 cases are diagnosed annually, and half of those patients will die.
But the hereditary diffuse cancer is rare: Approximately 150 families worldwide have been identified as carrying the gene mutation, though there are countless families that haven’t been tested, according to the nonprofit organization that Lambert helps lead, No Stomach for Cancer (www.nostomachforcancer.org). The group’s mission is to educate and advocate for those who carry the mutation.
Those who do are at a high risk — between 85 and 87 percent — of getting the stomach cancer, which carries a 5-year-survival rate of just 28 percent.
The test simply involves having blood drawn, which was covered by the Walshes’ insurance. But Lambert says she knows of others whose insurance has not paid for it. She underwent genetic counseling at Massachusetts General Hospital before opting for surgery.
Her counselor, Devanshi Patel, has done such work since 2004, and says that increased public awareness of genetic testing and advances in technology mean that more people are seeking it.
“It’s beyond the research stage,” says Patel. “We’re at a place where we can tell you what your risk is, which organs may be affected, and offer risk reduction options for you.” Doctors can now screen for 20 to 30 types of hereditary cancers, according to Patel.
As the science becomes more mainstream, Patel foresees more people opting for genetic screenings. But not all of her patients decide to do so.
“We get worried patients, and we look at the family history and tell them it doesn’t look like a risk,” she says.
Of the four surviving Walsh offspring, only David, the oldest at 55, has tested negative for the CDH1 mutation. “I’m the one with the stomach,” is the way he introduces himself at a recent meeting at Lambert’s Worcester home.
Their sister Kathy Flores, who is 51, lives in Houston, where she had her stomach removed. She spoke by telephone about life after the surgery.
The medical term is prophylactic total gastrectomy. The stomach is excised, and the esophagus is attached to the small intestines. The surgery takes up to five hours, and nothing can be ingested — no food, water, or even ice chips — for the first few days to guard against leakage and infection.
On Sept. 14, 2007, Lambert and her brother Mike had back-to-back procedures at Massachusetts General Hospital, with the same surgeon, Dr. Sam Yoon. They were the third and fourth patients at MGH ever to have the procedure, which took 3½ hours each, and were in the hospital a week.
That was the easy part. Life after surgery has been a challenge, with tiny meals, weight loss, and worst of all, reactions such as nausea, cramps, heartburn, weakness, and fatigue.
The vagus nerve, which extends from the brain stem through the abdomen, generates feelings of hunger in the stomach, and losing that piece of the nerve can cause problems.
“Once, I went four days without eating,” says Mike Walsh, who runs a demolition company with brother David. “I didn’t feel hungry, I lost 5 pounds, and I was all shaky.” Sometimes, he has to take a steroid to encourage his appetite.
Beth Lambert has not had that problem. “I was lucky I was overweight,” she says. She has lost 100 pounds. “That weight was helpful; I didn’t have to worry about not eating enough.”
Flores, too, lost 100 pounds. “You’d think I’d be marathon material now,” says the preschool teacher. “But some days I have less energy than when I was heavier. It’s a little disappointing.”
When you have no stomach for food, grazing is the prescription: Eat small portions throughout the day. But at the beginning, Lambert was afraid to eat, afraid of getting sick.
“If you’ve ever had a stomach bug, you never want to put that food in your mouth again,” she says. “I always tell my apple crisp story.”
Her surgery was in September, apple season in New England, and Lambert was at home recovering. A friend brought over apple crisp and dished out a normal serving for her, after Lambert had eaten pasta. She loved the dessert, but she ate too much and became ill.
“It was terrible,” she says. “I was nauseous, sweaty, it felt like morning sickness.” That was nearly six years ago, but the same thing still happens whenever she or her siblings eat too much, too fast. They must chew slowly and thoroughly.
For Mike Walsh, it was the small raspberry tart, which followed half a small sub. “I thought I was going to die,” he says. “Then you get a phobia about eating the next thing.”
Both say their body temperature has cooled since they lost weight. Lambert lays a cold hand on a visitor’s arm to demonstrate. In warm weather, both are often in sweatshirts.
For most people, food is more than simple nutrition. It’s an important part of one’s family and social life, comforting and nurturing. And it’s a daily habit: breakfast, lunch, and dinner.
For the Walsh siblings, all of that has changed. Lambert still cooks most of the meals for her family, and sits down to eat with her husband and two sons. “Fifteen minutes later, she might not feel well,” says Paul Lambert, who met his wife in college. “She’ll say, ‘I knew I shouldn’t have eaten that, but I just wanted to taste it.’ Some things go down better than others.”
Still, he says he hasn’t worried about her health since the surgery: “Once the test came in positive for the gene, it was a no-brainer. It was an unpleasant thing, but it had to be done.”
In Houston, Kathy Flores says she’s lucky to have celebrated events like seeing one son off to college, and watching the other play varsity football. “All the life landmarks that my brother missed out on with his kids, I’m able to have those in my life,” she says.
Like her sister, Flores’s family members often finish her meals. “I serve myself less, and what I don’t eat, my husband and sons will pick up.”
But one thing she misses is milk, which her system can no longer tolerate: “I can’t have a bowl of cereal with milk, or milk with cookies. But I can still have the cookies.”
How about Doritos? “I can eat all the junk food I want to, but it’s just that I don’t want to,” she says. “If you overeat, you feel bad, and it’s not worth it. Your body tells you enough is enough.”
In 2009, Karen Chelcun Schreiber founded the nonprofit No Stomach for Cancer, from her Madison, Wis., home. Her mother died of stomach cancer at 52 in 1982, years before scientists discovered the CDH1 gene mutation. A generation later, in 2009, her brother died at 56 from stomach cancer.
“It was his illness that saved the rest of us in my family,” Schreiber says. Four members of her family who tested positive have had gastrectomies; her own surgery was in 2008. Her advice: Know your family’s medical history, educate yourself about stomach cancer, and advocate for yourself with your physician. “Even some doctors don’t know about the mutation,” she says.
Schreiber started her nonprofit after finding little information about the gene and stomach cancer; Lambert recently took over as board chairwoman. Her family, Schreiber’s, and others with the CDH1 mutation held a social gathering July 6 on Cape Cod.
The Walsh siblings say they’ve adjusted to life after the surgery, and they don’t complain about not having a stomach. As Mike Walsh puts it: “Even on some of the worst days I feel pretty blessed.”
Their new concern is for the next generation. Each of their children has a 50 percent chance of having the gene mutation. After his death, two of Steve Walsh’s three children tested positive.
Doctors do not recommend testing for the mutation until the late teens. Lambert’s boys are 13 and 9; Mike Walsh’s children are 15 and 12; the Floreses’ sons are 16 and 20. None have yet been tested, but all will be.
Lambert’s 13-year-old, Paul Jr., sat patiently listening to the adults talk about their journey. “If I had to have my stomach removed,” he says, “I’d feel relatively comfortable because I’ve been around people without stomachs on a daily basis.”
Looking at his mother, he adds: “I think of you as a normal Mom.”