A quirky sense of humor, twinkling blue eyes, a love for the great outdoors … family traits that deepen the ties that bind.
But for Jean Jones, of Anoka, and her extended family, there’s a certain family trait that they’d all rather do without: Jean’s family carries a rare genetic mutation that puts them at high risk for stomach cancer.
What that trait has caused them to literally “do without” is their stomachs.
That’s right, last year seven of Jean’s family members had their stomachs removed because that’s the only way to prevent the development of stomach cancer caused by the HDGC (hereditary diffuse gastric cancer) gene that appears in their family.
Two more family members have also tested positive for the gene and are scheduled for surgery in the coming months.
“It’s a rare genetic mutation and if you’ve got it, there’s an 80 percent chance you’ll get stomach cancer. With the cancer there’s a five-year life expectancy, so we said, ‘Yeah, take my stomach,’” Jean said.
Her second cousins Rachelle Weinand of Mora and Karin Ness of Big Lake also tested positive for the gene and have had their stomachs removed.
The CDH1 gene was first diagnosed in the Stokes family (Jean’s family of origin) two years ago. Most recently, stomach cancer claimed Jean’s brother’s life when he died Dec. 2, 2012.
“He was six-foot one-inch, 210 pounds (before diagnosis),” Jean said. “He was down to 135 pounds at death. It just ate him up.”
There is no way to scan for stomach cancer and symptoms sometimes mimic other conditions, such as GERD (gastroesophageal reflux disease), gastritis or peptic ulcer. Those with persistent symptoms are urged to request an endoscopy screening with multiple biopsies when appropriate.
“You have to educate the doctors as you go because this is so unknown,” Rachelle said.
What Jean and Rachelle and Karin and their family do know is that desperate times call for desperate measures.
“We have no stomach, but we still have to eat. There are no hunger pangs, no stomach growling so you never feel hungry, but your body needs those nutrients so, of course you have to eat,” said Rachelle.
When surgeons remove the stomach, the small bowel is reconnected to the esophagus and the far end of the duodenum is reconnected to the small bowel.
And so the body’s digestive process is accelerated.
“You eat and it goes directly into your system – the intestine absorbs all the nutrients except vitamin B and iron – but it takes longer to eat because you no longer have the stomach acids to break down food,” Rachelle said.
Karin further explained the process.
“You have to chew and chew and chew – you’re chewing to do the work of breaking down the food,” she said.
And since the stomach flaps which keep food in the stomach are also gone, a period of rest is necessary.
“You eat and then you sit for a couple of hours. You can’t lay down or bend over or stand up because the food will come up,” Karin said.
As six to eight small meals are eaten each day, it is necessary to complete the process each time. Eating with no stomach is no small task.
And that’s after having recovered from the gastrectomy (total removal of the stomach). The recovery time is about one year and everyone recovers at their own pace in their own way.
At first, eating can be uncomfortable and even painful, and many must force themselves to eat. While feelings of hunger no longer exist, feelings of weakness, light-headedness and emptiness trigger a need to eat.
“I feel like my batteries are low, that’s how I know I have to eat,” said Jean.
At first eating is out of necessity, then habit, but eventually the desire to eat returns.
But because of the drastic change in the digestive process, permanent weight loss of 20 percent of total body weight typically occurs within the first six months after surgery.
Jean has recently been asked to serve as regional coordinator for No Stomach for Cancer, an organization created to “support research and unite the caring power of people worldwide affected by stomach cancer,” as stated on its website.
“This is so unknown, so rare but this is somewhere to go for help, for support, to talk to someone who knows what you’re going through,” she said.
To learn more about stomach cancer, visit nostomachforcancer.org.
Symptoms of stomach cancer
The following are some common symptoms of stomach cancer. Symptoms may mimic other conditions, such as GERD (gastroesophageal reflux disease), gastritis or peptic ulcer. The No Stomach for Cancer website urges people with persistent symptoms to request an endoscopy screening with multiple biopsies when appropriate.
• Indigestion, heartburn or difficulty swallowing
• Discomfort or pain in the abdomen
• Nausea and vomiting and/or bloating after meals
• Diarrhea or constipation
• Loss of appetite and/or unexplained weight loss
• Weakness or fatigue
• Vomiting of blood or blood in the stool
• Sense of fullness after eating small amounts
Sue Austreng is at [email protected]