When Katy Kosyachkova was diagnosed with stomach cancer over a decade ago, doctors said that even with chemotherapy, radiation, and the complete surgical removal of her stomach, her chance of survival was 50 per cent.
“Essentially, at 21 years old, you’re told your life is a coin flip,” said Kosyachkova.
According to the Canadian Cancer Society, only 29 per cent of those diagnosed with gastroesophageal (GE) cancers survive for at least five years.
The grim statistics still drive Kosyachkova’s advocacy even now that she lives cancer-free.
“During my treatment of the surgery, chemo and radiation, I felt very alone,” said Kosyachkova. It was 2011 and she said there was no support network in Canada for stomach cancer patients, survivors and caregivers.
In 2016, Kosyachkova, and fellow survivor Teresa Tiano, co-founded My Gut Feeling, also known as the Stomach Cancer Foundation of Canada.
Kosyachkova says she and Tiano leaned heavily on each other as they discovered a niche for promoting education and advocacy for those battling the deadly disease.
Their efforts have helped secure millions in grant money, according to Dr. Elena Elimova, a medical oncologist focusing on gastroesophageal cancers at the Princess Margaret Cancer Centre in Toronto, where Kosyachkova is now a physician assistant.
“My Gut Feeling has been instrumental in getting a lot of research dollars,” Elimova said. She says the hospital recently secured $3.7 million from the Canadian Institutes of Health Research to support clinical trials for one promising drug. The drug, zanidatamab, targets a specific protein that causes cancer cells to grow quickly.
The specific protein is called human epidermal growth factor receptor 2 (HER2), Elimova said, and presents, now, in approximately 20 percent of patients with stomach cancer.
“We know that if we give these patients targeted HER2 therapies, they’ll give longer,” said Elimova.
The grant allowed the hospital to run clinical trials in centres across Canada, which in turn allowed patients to avoid needing to uproot their lives to receive care at Princess Margaret, she said.
“The trial was developed with the help of My Gut Feeling patient advocates because it’s, of course, very important for us as clinicians to know what’s important to our patients,” Elimova said.
Patient outlives prognosis
When Gary Wang was diagnosed with stomach cancer in August 2020 after three days in the ER with stomach pain, he says he was given between one month and one year to live.
He’s one of the clinical trial patients — and still alive 39 months after his diagnosis.
He says zanidatamab stopped the pain and nausea he was experiencing, and made it possible for Wang to go back to work full-time at an IT company.
“I have no problems traveling around or going to the gym,” said Wang, who adds he will likely stay on zanidatamab for a few years as the hospital monitors his cancer.
There are more treatment options now, Elimova says, than when she began working as a staff oncologist 10 years ago.
More research and money needed, says Elimova
Even though the majority of patients diagnosed with stomach cancer will die from it, Elimova says that it doesn’t receive as much attention and funding compared with more common cancers such as lung, breast, colorectal, and prostate.
She credits My Gut Feeling with changing that by calling attention to it.
“I think there’s a lot of hope, but I think that hope will only keep moving forward if we keep doing research on this cancer,” Elimova said.
“I think they have made a tremendous difference to what we do, because they’ve raised awareness for what’s happening.”
My Gut Feeling holds semi-monthly support groups for patients, as well as an annual conference where patients, caretakers, survivors and healthcare professionals can learn about the latest in research and treatment options..
Kosyachkova says the results of their six-year campaign will be on full display Nov. 30th when 150 international sites around the world — including the Leaning Tower of Pisa in Italy and the Kyoto Tower in Japan — light up periwinkle blue for Stomach Cancer Awareness Day.
“We’re very proud of that,” she said.