The only stomach Chari Dickson has is about 8 inches tall, 6 inches wide, bright purple and has a cheerful applique face. She bought it on Amazon because it made her laugh.
Doctors at Huntsman Cancer Hospital removed the 36-year-old woman’s real stomach less than two weeks ago, a preventive measure to spare her a painful, cancer-filled future death. A gene mutation has burned through her family, killing her mom, her grandfather and at least one uncle.
She is the latest family member to undergo a gastrectomy, where the entire stomach is removed and the esophagus connected directly to the small intestine. Her younger sister Ashlyne Hatch, 34, an uncle and her mom had similar surgeries, although for her mom it was about diminishing pain that she described as 100 on a scale of 1 to 10.
It was already too late to save Phelecia Hatch’s life.
At least 20 people in Chari and Ashlyne’s immediate extended family have a SMAD4 gene mutation, which leads to unchecked cell growth and can cause cancer throughout the digestive tract. It’s an autosomal dominant gene mutation, which means that if you have it, each of your children has a 50-50 chance of inheriting it. If you don’t have it, you can’t pass it on.
The numbers in this family are daunting.
Chari and Ashlyne have an uncle whose children each have the mutation. Both of Chari Dickson’s children, who are 7 and 9, have it. Her daughter has already had polyps removed. Some people develop polyps in their colon, others in their stomach. Sometimes, the polyps are in both. They can be found and removed during colonoscopies and endoscopies that must be done frequently, but eventually there are simply too many to get them all and even one left behind could turn into cancer.
Ashlyne Hatch had her first colonoscopy and endoscopy in her early 20s and the mutation proved to be aggressive. Within a few years, she needed her stomach scraped every four months and although none of the polyps were yet cancerous, she shouldn’t have had them at all. Eventually, doctors told her she’d likely live better and longer without her stomach.
She took some time to consider it while she kept up on her screening schedule, she said. She had to mull it over and get used to the idea, but opted to have the operation two years ago.
Chari’s last endoscopy before she decided to have a gastrectomy, too, found polyps growing so close together they formed what looked like a laminate floor, she said, noting sometimes SMAD4-related polyps are described as carpet-like because of their seemingly wall-to-wall coverage.
The mutation’s damage is fast-moving and people are told to have their first colonoscopy 10 years younger than the age at which polyps were initially found in a parent. The advice is true for endoscopies, too — if someone is advised to have one at all.
And there’s another complication that’s possible with several gene mutations, including SMAD4. It’s usually called HHT because its real name, hereditary hemorrhagic telangiectasia, is too hard to say or spell. That related condition creates abnormal blood vessels, among other issues. Nosebleeds can be so common and so severe that some people opt to have their nose sewn shut, she said. Her own nosebleeds, while persistent starting in childhood, have been much more mild.
Discovery of a mutation
Brent and Phelecia Hatch met at Pasadena City College in California, married and had seven children, a brood that includes four boys and another girl in addition to Ashlyne and Chari. The other five didn’t inherit the mutation, which doesn’t care about gender or birth order or other factors. The 50-50 chance is individual.
Phelecia knew that her dad died of colon cancer and, like a good health steward, she had regular colonoscopies. She didn’t know she should also be having her esophagus and stomach scoped. That was something Chari learned when she started having issues and had a genetic test that revealed SMAD4, which she researched very deeply. She tried to convince everyone in the family that having colonoscopies wasn’t enough. But their doctors weren’t telling them that and for a long time, the advice was brushed off.
By the time Phelecia Hatch’s cancer was found, it was stage 4. She lived almost exactly three months and her husband Brent thinks that she willed herself to make it so she could see her son get married. She died the same day. She was 54.
“The sad thing is, Chari two years previous sent her an email saying that you guys need to get an endoscopy and she just kept getting colonoscopies because that’s what her dad died of,” Brent Hatch said.
Phelecia Hatch’s brother Devin also died as a result of cancer from the SMAD4 mutation. The abnormal gene has exacted a very painful toll.
A different but ‘doable’ life
But on a sunny recent weekday in the Hatch family’s Mapleton home, where Chari sits beside Ashlyne hugging the stomach pillow tightly while she sips a protein drink, she and her sister chat cheerfully over the top of each other, finishing each other’s sentences as they try to explain a medical challenge that has to some extent shaped their family life for years.
They can still eat, they explain, though it’s different. Lack of a stomach messes some with hunger and satiety signals. They pick their food carefully for high protein and nutritional value, because food is fuel but the path through the esophagus is narrow and there’s no holding tank waiting at the end. They limit how much sugar they consume because it increases digestive distress.
What they consume moves down the esophagus and into the small bowel, so it doesn’t break down as well as it would in the stomach, nor does it linger to get full absorption of the nutrients. And it’s hard to get excited about food when you never feel really sated and all you do is eat, albeit small amounts at a time.
Still, they can eat pretty much anything, as long as they chew, chew, chew like crazy, they agree, although Chari’s surgery is so recent that she’s still on soft foods. Ashlyne actually had to supplement with a feeding tube for 18 months after her surgery and she fights to keep her weight up.
If you don’t have a stomach, you can’t have stomach cancer — at least in your stomach, the sisters explain. So having it removed was for them a form of prevention. They think of their mother all the time — when they see a sunflower is a particular trigger, because she loved them so much. They adored her and watched her suffer terribly and they want no part of that.
But while the risk of cancer in their stomach is removed, they still have the mutation. They’ll need to have colonoscopies and monitoring to make sure all is well with their reconfigured digestive system.
Is it hard? Ashlyne is asked. “Sometimes,” she replies. “But it’s doable.
Brent Hatch is in the background, staying out of the way as they tell their story, but keeping a watchful eye on Chari to see that she’s healing well. He worries about both of them, he said, perhaps scarred by watching what his wife endured.
Brent’s been trying to convince the U.S. Preventive Services Task Force to recommend that people have a screening endoscopy and colonoscopy at the same time. The task force makes recommendations on screening schedules and told him by email that they recommend colonoscopies on a schedule between the ages of 45 and 70. They have no recommendation for stomach or esophageal cancer, he was told, but he could nominate that for consideration if he wants.
It boiled down to not enough people die as a result of not having an endoscopy to nudge a recommendation, he said.
Choosing a joyful life
Despite all of it, they’re a happy group. The sisters joke that the “No Stomach for Cancer” slogan for stomach cancer awareness month could have been designed for them specifically.
Seahorses are an unofficial symbol for those who have gastrectomies, a sort of just-like-you mascot because they don’t have a stomach either. A seahorse has a tube that goes down and they eat all the time, too. It’s a kindred spirit whose image Chari Dickson especially likes.
Brent Hatch isn’t surprised that his girls are adapting and moving forward. He said happiness is a choice; you choose your attitude. He misses his wife and hates the mutation that is causing so much damage to so many people that he loves. But he has no intention of moping around for the rest of his life. He chooses an abundant life and his daughters do that, too.
He’s been blessed, as well, to remarry. He wed someone who understands the mutation and the challenge in a visceral way. His wife Julie lost her husband to a SMAD4 mutation and it is rampant in her children, too. Julie was married to Phelecia’s brother who died.
For now, Chari is learning a new way to eat and has the benefit of a been-there-done-that life coach in her younger sister Ashlyne.
The family knows more now than they did when their mom was diagnosed. And they’re ready and able to fight for their lives.