North Dakota woman navigates life without a stomach

LINCOLN, N.D.-Heather Huus, of Lincoln, has been adjusting to her "new normal" ever since she had her stomach removed in August 2016.

After receiving unfavorable results from a genetic test, which indicated she was at risk for an inherited cancer syndrome, Huus, 32, made the fateful decision to undergo major surgery.

Genetic tests analyze a person's genes, or the DNA inherited from their mother or father. One genetic counselor in Minneapolis said genetic testing is becoming more common in the realm of cancer, and as people are becoming more conscious of their genes.

"I think the general public is maybe more aware of some of these genes, as well as getting better at asking more questions of their doctors and being involved in their health care," said Geoffrey Beek, a genetic counselor at Children's Hospitals and Clinics of Minnesota.

Huus was 19 years old when her mom died of gastric cancer. Her mom's father died of the same disease.

Huus, a treatment coordinator at a dental clinic in Mandan, N.D., has adapted to her new life sans stomach. She said some of her family members in North Dakota also have had their stomachs removed, or plan to, due to their family's increased risk of cancer.

Huus is married and raising a 5-year-old daughter, Paige, who she said played a part in her decision to have a total gastrectomy.

"I didn't want Paige to go through what my sister and I went through," she said of the life events missed after her mom died.

As Huus was nearing her 30th birthday, her family physician recommended she visit with a gastroenterologist. Huus said she wanted to learn how to be preventative.

Her family history of cancer was brought up, and she was immediately referred to Mayo Clinic in Rochester, Minn., where she met with Beek, then a genetic counselor at Mayo Clinic.

Huus said she was tested for the CDH1 gene mutation that causes hereditary diffuse gastric cancer, an inherited disorder her mom was diagnosed with. People with the hereditary diffuse gastric cancer caused by the mutation have an increased risk for stomach cancer and lobular breast cancer.

"For people who test positive-the risks are slightly different for men and for women-but in the simplest terms it puts them at a very high risk of developing gastric cancer," Beek said.

Beek said genetic counselors get referrals from primary care doctors and oncologists because of a person's family history of cancer. Only about 5 percent to 10 percent of all cancer is hereditary, he said.

"So, in genetics we are really focusing on that small percentage that is putting individuals and families at a much higher risk of developing cancer," Beek said.

Huus said Beek carefully went over possible test results with her and her husband. Without knowing whether Huus' mom had the gene mutation, Huus said she was given a 25 percent chance of testing positive. She wanted to get the test done and know for sure, but hoped that results would not come back inconclusive.

Six week later, the results were in: Huus tested positive for the gene mutation.

She said she was given an 83 percent chance of having hereditary diffuse gastric cancer and a 4 percent chance of survival. By that time, she had researched her options, which were to either undergo screening or prophylactic surgery.

"I feel like having those odds, to me, (the decision) is a no-brainer," she said.

The year up until her surgery proved to be difficult for Huus. She grieved the loss of her stomach, much like people grieve the loss of a limb before an amputation.

Aside from a few skeptics, the majority of her family was supportive of her decision to have her stomach removed.

On Aug. 16, 2016, at St. Mary's Hospital in Rochester, Minn., she had surgery. Instead of her stomach, her esophagus is now attached directly to her small intestine.

Huus said she started with a liquid diet and slowly worked her way up to solid foods. Fast forward to today, and Huus can pretty much eat whatever she wants. She has to chew her food more and eats every two to three hours. She can't tell when she's hungry or full. She also takes multiple vitamins daily and injects B12 once a month. She lost 125 pounds and says that this is a "healthier way of living."

"This is my new normal," she said.

Five other family members also have tested positive for the CDH1 gene mutation. Huus' aunt in Buffalo, N.D., had a total gastrectomy in February. Her cousin in Jamestown had the same surgery about a week ago, and another cousin in Fargo plans to have one this summer.

Documenting her journey without a stomach-"the good, the bad and the ugly"-in a blog, Huus has become an advocate for No Stomach For Cancer, a Wisconsin-based nonprofit that aims to increase awareness of stomach cancer.

"Stomach cancer is a long neglected disease, primarily because the majority of cases are outside the United States," said Jon Florin, executive director for No Stomach For Cancer, which was founded in 2009 by a woman who discovered the CDH1 mutation in her family.

Gastric cancer is one of the leading causes of cancer deaths worldwide, according to the World Health Organization. In 2015, there were 754,000 deaths caused by gastric cancer.

Florin said his organization focuses on awareness, such as the Spotlight on Stomach Cancer Symposium held twice a year across the U.S. The group also provides research grants, including $100,000 this year for studies on immunotherapy and blood biomarkers to predict early recurrence of stomach cancer.

"Bringing awareness to stomach cancer is vital for prevention and vital for survival," Florin said.

For more information, visit No Stomach For Cancer website. Huus' blog can be found at heatherhuusgutfeelings.blogspot.com.