Family shares their battle with rare stomach cancer causing gene

November is Stomach Cancer Awareness Month. While it’s a diagnosis that’s not widely talked about, more than 25,000 new cases will be diagnosed this year. Doctors says early detection can save lives, and for one Colorado family that recently became abundantly clear.
Burt and Amy Knight say gathering for a meal in their Jefferson County home with their daughters and their families reminds them of something important.
“I am blessed. I mean, God’s got a plan for me,” Burt said.
Four years ago, Burt knight learned he had stomach cancer that had spread into his chest cavity.
“If you Google Stage 4 stomach cancer, it’s pretty negative. … I mean we are talking single digits,” Knight said, referring to the number of years a patient generally has to live after diagnosis.
Within days of his diagnosis, Burt was setting up his treatment plan: first chemotherapy and then a surgery to remove his stomach.
“They connect your esophagus to your small intestine,” he said about the process.
It was a major life change, and then there was more bad news to worry about. Genetic testing determined he had CDH1, a rare and hereditary gene mutation that increases cancer risk. And his daughters Kerri Henning and Justine Staples had a 50/50 chance of having the same gene. Burt said that made for some challenging days.
“You’re not only worried about your life expectancy — again, worry is a wasted use of energy — but, you know, you’re the reason that they’re going to have to deal with something on their plate that they had no reason to deal with,” Burt said about his daughters.
It turned out Henning and Staples not only had the gene, but they also had a decision to make. They had to decide whether they should get tested for stomach cancer. Henning opted for the testing, and after one round of biopsies she found she also had it. It was Stage 1 stomach cancer.
“It was a little shocking because … I was like, it was a needle in a haystack — and you found this one spot,” Henning said.
Staples didn’t wait to find out. Soon after that, both sisters had their stomachs removed as well.
“It was an easy decision,” Staples said.
They have tough days, met with increased fatigue, but over time they have learned what foods work and what foods don’t with their condition.
“You don’t feel a whole lot of hunger, though, so it’s more of a routine. You have to remind yourself to eat and to eat often. And small portions, and eat slow and eat healthy,” Staples said.
“You know, you just look at things differently. You look at the bright side of things,” Henning said.
Having caught things early. They have now removed any chance of stomach cancer in the future and know enough to help protect their own children.
“The hard part is unfortunately (Burt) getting sick and all that he struggles with sometimes, it really saved our lives,” Staples said.
Burt continues to have regular checkups every six months and now advocates for better screening tools. He says his daughters’ early detection is his own blessing. And more time together is a reason to be thankful.
“I’ve beaten the odds dramatically right now, and I think I’m going to go through the other end and I’m going to see my grandchildren get to older ages. That’s my goal,” Knight said.