In November 2016, Teresa Tiano , Katy Kosyachkova and Dr. Christine Brezden-Masley spoke at an event during Stomach Cancer Awareness Month to a group of researchers about stomach cancer, with the goal of inspiring pharmaceutical researchers to continue their important work in finding treatment options for this disease. This year, My Gut Feeling is hosting its first Stomach Cancer Conference on Nov. 25 at the Li Ka Shing Knowledge Institute, bringing together healthcare providers, researchers, patients, survivors and caregivers.
By :Evelyne Jhung
When Katy Kosyachkova, then 21, was being treated for stomach cancer in 2011, she was desperate for support.
"I literally had no one to turn to. It was the scariest experience of my life and I felt so isolated. That's why I posted on an online forum even though I'm a private person," said Kosyachkova.
Teresa Tiano, a fellow stomach cancer survivor, responded to her online post.
"Meeting Katy was such a blessing. I felt incredibly alone in this journey. We connected and I was able to talk to her about things nobody else could understand because Katy had already been through treatment by the time I was starting mine," said Tiano.
After the two connected, they decided to create their own support group. With the help of Tiano's oncologist, St. Michael's Dr. Christine Brezden-Masley, they co-founded My Gut Feeling, the first non-profit organization in Canada dedicated solely to stomach cancer, and held its inaugural monthly Stomach Cancer Support Group meeting at St. Michael's one year ago.
"I'm so proud and humbled that our patients have taken this forward and brought it to life," said Dr. Brezden-Masley.
With only 3,500 cases per year in Canada in 2016, stomach cancer is considered an "orphan cancer." In contrast, there are approximately 25,000 cases of breast cancer per year. Many of these patients are treated at St. Michael's – as a sole oncologist, Dr. Brezden-Masley sees one of the largest number of patients with stomach cancer.
The support group has about 15 regular attendees and meets once a month at St. Michael's, with callers from the NWT, Alberta, Halifax, even California, as well as from within the hospital.
"The virtual aspect of this group is important. Stomach cancer is extremely aggressive and many are wheelchair-bound during treatment. It's hard to get out of bed to come to a meeting," said Kosyachkova.
The support group also offers one-on-one support to its members, with Tiano and Kosyachkova visiting or checking in by phone every week or so.
"Starting My Gut Feeling gave me purpose, something positive to focus on. I want to offer hope to others going through this and help them feel less lonely, even it's simply holding their hand and just being there for them," said Tiano.
If you know of a patient, survivor or caregiver looking for support, let them know about @mygutfeeling1 on Twitter, Facebook and Instagram.