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Katy Kosyachkova lives without a stomach. She was diagnosed at age 21 with stomach cancer and had a total gastrectomy. Her entire stomach was removed.
She had no symptoms until she fainted during a final university exam. No one suspected cancer. Once confirmed, surgery was done immediately because of stomach cancer’s aggressive nature.
It was a terrifying eight-hour operation followed by drastic weight loss during the following year. Kosyachkova dropped from 176 pounds to 126 pounds.
“My life post-OP involved pain, limited food choices, difficulty putting on weight, and malabsorption,” says Kosyachkova, a 5-foot-7 physician assistant. She entirely lost her appetite – even water was painful going down and would come back up.
“Dumping syndrome,” also known as diarrhea, and gas, belching and painful bloating plagued her, and can still return occasionally. “Initially I had a hard time eating anything. I couldn’t eat lunch with my friends or family, go out to restaurants.”
Currently she is able to enjoy most meals, and eats smaller portions more frequently. Sugar and spices are off her menu.
She isn’t alone. This year, an estimated 4,100 Canadians will be diagnosed with stomach cancer – an increase of 18% from 2017, yet there is little awareness about this deadly cancer, reports My Gut Feeling Stomach Cancer Foundation of Canada.
Kosyachkova and Teresa Tiano co-founded Mygutfeeling.ca, a volunteer-run Canadian non-profit foundation supporting patients, survivors and caregivers affected by stomach cancer. They are hosting national Stomach Cancer Awareness Day on November 30th, and their annual medical conference at St. Michael’s Hospital on the same day.
Having no stomach has definitely made life more challenging, especially dating, admits Kosyachkova. She is very self conscious about her body. “When I initially lost weight it caused a lot of sagging skin. I also have a massive scar across my abdomen.
“In a way it is an invisible disability. I eat very slowly, don’t always eat what is on my plate and appear to be a picky eater. I also get gassy in public which is very embarrassing.”
On the positive side, she says she is much more conscious of what she puts into her body, making healthier choices, eating slowly and relishing her meals.
Spicy suicide chicken wings are what she misses most: “My family used to have competitions about who could eat the most spicy wings. Unfortunately spice is no longer my friend.”
Nine years since diagnosis and she still lives in fear that the disease will come back. “If I have a cold or any random ache and I always worry it is back. I didn’t have any symptoms and that is the scariest fact for me,” says Kosyachkova, adding that scan times and anniversaries are the worst.
“It is not a disease that affects only older people with poor eating habits, it can happen at any age,” says Kosyachkova.
Teresa Tiano was diagnosed at age 45 with stomach cancer, and lost 80% of her stomach along with 95 pounds – “I pretty well lost a person!”
She had mild ulcer-like symptoms. The doctor found an ulcer along with a tumour, second stage stomach cancer.
“It’s a very frightening diagnosis – my world stopped,” says Tiano. “I didn’t even realize that someone could get stomach cancer let alone live without this vital organ.”
She had laparoscopic surgery within a month, and was out of the hospital in four days, followed by 4½ months of chemo and radiation.
Tiano, 53, works fulltime as an executive assistant and eats small meals often throughout the day. She suffers from chronic fatigue. Many survivors also suffer from anemia, B12 deficiency, dehydration and nausea.
At 5-foot-2, Tiano has struggled to put on 12 pounds and now weighs 129 pounds. “Food is so much a part of our lives – it’s unthinkable to have to give up eating, but you do at the beginning.”
She had to learn how to eat all over again. Water is still a “nightmare.” She misses the variety, but most of all pasta with tomato sauce – “after all, I’m Italian! That was the last meal I had before this all happened.”
Today both Tiano and Kosyachkova are doing more than surviving – they are thriving and advocating for others battling this dreaded disease. “It is possible to live without a stomach – 100% of mine is gone! No I do not have a pig stomach or a pouch, and no I do not need a transplant,” says Kosyachkova. “Life without a stomach is hard, but it is still a life worth living.”
Reduce your risk of stomach cancer by avoiding processed meat and excessive amounts of alcohol, and staying at a healthy body weight.
“Excess weight and obesity is associated with chronic inflammation which can promote cancer development,” says Denise Gabrielson, a registered dietitian in Oncology/Hematology at St. Michael’s Hospital Toronto.
More than three drinks days per day increases the risk for several cancers including stomach, says Gabrielson.
Foods to avoid: Bacon, sausages, ham, cold cuts/deli meats like salami, bologna, turkey, as well as frozen meat products.
STOMACHING THE FACTS
Few who get stomach cancer are long-term survivors.
“This is in part because of the aggressive biology of the cancer, and also because many patients aren’t diagnosed until they are at an advanced stage where chances for curative therapy are less,” says Dr. Stephanie Snow, a medical oncologist at QEII Health Sciences Centre in Halifax and associate professor at Dalhousie University.
“We are seeing an increase in cancer at the gastro-esophageal junction,” adds Dr. Christine Brezden-Masley, medical oncologist at Mount Sinai Hospital.
Symptoms are generally of a non-specific nature: Many patients only complain of indigestion or heartburn initially, says Snow. “One of the warning signs is symptoms of indigestion that don’t improve or get worse despite prescribed therapy like acid suppressant pills.”
Other warning signs are a feeling of being full after eating a small amount of food (early satiety), significant weight loss or central upper abdominal pain, or iron deficiency.
See your doctor if you have persistent or concerning symptoms.