A woman from North Dakota had her stomach surgically removed to avoid developing the cancer that killed her mother and grandfather.
Heather Huus, 32, underwent a gastrectomy in 2016 when a genetic test determined that she carried a gene that put her at an 83 percent risk of developing hereditary stomach cancer and a four percent chance of survival.
The procedure removed her stomach completely, connecting her esophagus to her small intestine where she now has a slightly altered digestive system meaning she cannot feel when she’s hungry or full and has to snack every three hours.
Her decision has inspired several of her family members to get genetic testing, some of which followed through with the surgery after tests came back positive.
Heather revealed to Daily Mail Online that she made the choice to remove her stomach so her five-year-old daughter Paige wouldn’t have to endure losing her mother like she did.
Heather Huus, 32, had her stomach removed last year due to having a high risk of getting gastric cancer which killed her mother
Heather, her husband Sean, 30 and daughter Paige, five, live in North Dakota. Heather told Daily Mail Online that she got the gatrectomy so her daughter wouldn’t see her die of cancer
Hereditary diffuse gastric cancer (HDGC) is caused by a mutation in the CDH1 gene.
It is estimated that less than one percent of Americans will develop stomach cancer of any kind and only a small fraction of those will be HDGC.
Doctors urged Heather to undergo genetic testing after the cancer consumed 80 percent of her mother’s stomach killing her within two years of a diagnosis. She was 44.
Heather was 19 and her sister 14 at the time of their mother’s death.
Doctors said there was a 25 percent chance the sisters carried the gene that led to stomach cancer in both their mother and grandfather.
It wasn’t until Heather, a dental treatment coordinator, had her daughter that she decided to get tested.
At 30 years old her test came up positive for the CDH1 gene.
‘I asked doctors how I can lower the risk of getting it and they told me there was nothing I could eat, drink or do because no one knows what triggers it,’ she said.
Heather was told that she could either get a scan of her stomach lining done every six months or have a gestectomy, a complete or partial removal of the stomach.
Screening was not the best option because stomach cancer is difficult to detect at the early stages.
The cancer grows on the outside lining of the stomach and an endoscopy is typically able to detect the cancer once it reaches its final stages.
This was the case of Heather’s mother who after feeling sick went in for a scan that didn’t detect anything, but six months later the cancer had consumed almost all of her stomach and within months had spread everywhere.
Doctors told Heather that her best bet at prevention was to remove her stomach.
In August 2016 she had her stomach removed at a hospital in Minnesota.
‘Watching my mom take her last breath was one of the worst things I ever had to see in my life and I did not want that for Paige. Knowing she will never have to see me die from that cancer is a weight lifted off my shoulders,’ Heather said.
Heather’s esophagus is now connected to her small intestine and she cannot feel when she is hungry or full so she snacks throughout the day
The gastrectomy attached her esophagus to her small intestine.
Since her surgery 15 months ago, she has lost 130 pounds due to a significant change in portion sizes.
‘I don’t get hungry and don’t get full because there’s no stomach to tell my brain these things,’ she said.
WHAT IS HEREDITARY DIFFUSE GASTRIC CANCER (HDGC) ?
Hereditary diffuse gastric cancer (HDGC) is an inherited condition and a form of stomach cancer.
It tends to affect much of the stomach rather than staying in one area of the stomach.
Approximately 20 percent of all stomach cancers are diffuse gastric cancers, and a small number of these are due to HDGC.
It is caused by a mutation in the CDH1 gene.
Gastric cancer is rare only affecting about one percent of Americans.
Only a small fraction of those will be due to HDGC.
Treatments include radiation and chemotherapy as well as a gastrectomy.
It is difficult to detect as the cancer does not form a mass and cannot be seen on a CT scan or MRI.
It can only be detected through an endoscopy, typically once it is already in stage 3 or 4.
Heather said her body gives other cues if it has been too long since eating including becoming lightheaded, lethargic and fatigued.
Now she eats every two to three hours and her intestines can’t handle more than two cups of food at a time.
‘On the weekends in the hustle and bustle of everything I can forget to eat and all of a sudden it hits me and I’m super tired,’ she said.
She has to grind food down by aggressively chewing before swallowing and maintain a high protein diet.
She is able to exercise normally and ran two 5k races this summer, though she was snacking throughout the run.
The difficulties lie in making sure Heather gets enough nutrients.
She is not supposed to drink anything before, during or after she eats because the liquid will go through her system too quickly, flushing out the nutrients.
Consuming foods and drinks with more than 20 grams of sugar causes her to feel drunk, according to Heather.
‘I had a can of coke that has 39 grams of sugar and I couldn’t drive home that night,’ she said.
While soda makes her feel drunk, alcohol now barely affect hers.
Heather said she can have a few shots and get a tipsy feeling that wears off within 10 minutes.
Junk food now makes her lose weight as the grease and sugars cause dumping syndrome, where the food goes through her and
She has inspired her aunt, cousins and sister to undergo genetic testing, several of which have come back positive for the CDH1 gene.
This year Heather’s aunt and cousin had their stomach’s removed.
Heather said her sister, 27, is waiting to finish having children and another cousin, 19, wants to graduate college before undergoing the surgery.
Doctors advised them to have the genetic test before the age of 34 because the cancer has a good chance of developing in their 40s, like Heather’s mother.
‘I was the guinea pig with this because they all wanted to see how the surgery would go,’ she said.
As far as her daughter Paige, they will wait until she is 16 to test if she carries the gene because she has a 50 percent chance of having it.