What started as an annual checkup turned into a life-changing, body-transforming medical odyssey for North Dakota native Heather Huus, 33. Two years after that exam, she’s now living without a stomach, even though it had been a perfectly healthy organ — and she couldn’t be happier.
In 2014, Huus was chatting about her family health history with her physician during a routine appointment. Since she was only 30 years old, she figured she had a few decades to go before worrying about possible, genetically-influenced health issues, although her mother had died of gastric cancer at age 44. When the doctor learned that Huus’ maternal grandfather had also died of the same cancer, she suggested genetic testing, just to be preventative.
When gastric cancer is an inherited condition, it’s called hereditary diffuse gastric cancer (HDGC). In this type, there’s no solid tumor. Instead, cancerous cells multiply underneath the stomach lining, and the diffuse nature of the cancer makes it more likely to spread to other organs and surrounding bones.
HDGC is more rare than other cancers with a strong genetic link — like colon, breast, or ovarian cancer — and forms only a tiny percentage of gastric cancers, according to the National Institutes of Health. Annually, about 900,000 people develop gastric cancer in the U.S., and HDGC accounts for slightly less than 1 percent of those.
Those who test positive for the gene — a mutation of the CDH1 gene — have about an 83 percent chance of developing the cancer at some point in their lives, says Anton Bilchik, M.D., Ph.D., professor of surgery and chief of gastrointestinal research at John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, California.
Without the mutation, the CDH1 gene is a tumor suppressor, but when its functionality is compromised, it has the opposite effect, potentially prompting cancer progression and metastasis.
Dr. Bilchik adds that if gastric cancer occurs for those who carry the genetic mutation, there is a 20 percent chance of survival if it’s caught early. But if it’s reached at a later stage — which occurs often, because the cells can be hidden in the stomach lining — the survival rate is only 4 percent.
When Huus heard those odds, she decided to get the genetic test, especially since she has a young daughter.
“I looked at her and thought about what it was like to see my mom go through this cancer, to be so sick, and then to lose her,” she says. “If I could do anything to spare my daughter that pain, I wanted to do it.”
Taking the step
Huus met with a genetic counselor at Mayo Clinic in Rochester, Minnesota, had the blood test necessary for identifying the gene, and then waited six weeks for the results. When they came back positive, she recalls actually feeling relieved.
Until then, she hadn’t realized how paranoid she’d become about getting cancer at a young age — every cold or flu symptom had her wondering if she was developing stomach cancer. The positive-gene results also gave her a sense of clarity about what she could do to eliminate the risk of gastric cancer: a total gastrectomy, in which the whole stomach is removed.
“When I first heard about a gastrectomy as a preventative procedure, I thought it couldn’t be possible,” she recalls. “Who can live without a stomach? But the more I researched, the more I realized that you can do exactly that, and live normally, too.”
Having a preventative gastrectomy is still considered a radical procedure, Dr. Bilchik says. “Obviously, it’s life changing,” he says. “But for those with the gene mutation, it is an option that should be very seriously considered, given the odds of getting the cancer.”
The general recommendation, he says, is gene testing for those under age 40 who are diagnosed with gastric cancer, as well as those who have two family members who have had this type of cancer. He adds that if you carry the gene mutation, your children have a 50 percent chance of also having the mutation.
The only option besides a preventative gastrectomy is to do serial endoscopies and biopsies every year, Dr. Bilchik says. But even then, gastric cancer could form in the time between those appointments, and since HDGC is aggressive, it might be advanced by the time it’s detected.
Fortunately, the procedure for stomach removal has improved in the last decade thanks to robotic surgery, which is more minimally invasive, he adds. Recovery is faster, with fewer complications. Similar to bariatric surgery for weight loss — particularly gastric bypass surgery — the procedure involves connecting the esophagus directly to the small intestine.
“From a functional standpoint, you need your small intestine to survive, but you don’t need your stomach,” says Dr. Bilchik. “That surprises many people, but the fact is that you can have a normal quality of life after this surgery, you simply adjust to living without a stomach.”
Adjusting to a new normal
Just before her gastrectomy in 2016, Huus remembers feeling a sense of grief over the loss of her stomach, almost as if she were losing a friend. After all, it had been with her through all of life’s big food events — every holiday, every celebration, every first date. She hadn’t anticipated such a wave of emotion.
“As I washed my belly the night before the surgery, I was crying in the shower,” she says. “I had a brief moment of second thoughts. But then I realized: This friend could turn on you without warning. It’s got to go.”
The procedure went well with no complications, and Huus recovered quickly from the surgery itself. But adjusting to life without a stomach took nearly a year, as she figured out strategies that helped her maintain her energy and halt her weight loss. She’s down 125 pounds since surgery day, and is now focusing on strength training to build her muscle mass back.
Not surprisingly, food has been her biggest struggle. Without a stomach, she doesn’t get hungry, and also doesn’t experience fullness, so Huus has to remind herself to eat at regular intervals to keep her energy from crashing. She also gets monthly B12 shots because without a stomach, she can’t absorb that crucial vitamin from food or even supplements.
As Huus works to gain more strength and keep her food on track, there’s one thing she feels she’ll never have to adjust: her belief that she did the right thing by having a preventative gastrectomy.
“Finding out that I carry the CDH1 gene made all the difference,” she says. “I feel like a huge weight has been taken off my shoulders.”