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When Teresa Tiano had her stomach removed, she didn't know how she was going to survive.
Between constantly feeling sick, not being able to eat properly and the havoc it wreaked on her social life, she struggled to find the support she needed to get by.
"I didn't even know you could get cancer in the stomach, let alone live without one," says Teresa, 57, who was diagnosed with Stage 2b adenocarcinoma of the stomach in 2011, requiring a partial gastrectomy.
"The way I looked, what I could eat, what I could and couldn't do – it completely changed my life."
That's why Teresa co-founded My Gut Feeling, a non-profit foundation dedicated to helping others navigate the unique challenges of living with stomach cancer. It spreads awareness, provides education and ignites advocacy.
Thanks in part to My Gut Feeling, more than $16 million was recently granted by the Canadian Cancer Society and the Canadian Institutes of Health Research for stomach cancer research to three different teams. Princess Margaret Cancer Centre's world-renowned researchers are at the forefront of one of them.
Now, Teresa finds strength in saying "I live without a stomach" – and hopes to empower others to do the same.
"You have to be an advocate for yourself, and to me, that's hope," says Teresa, who takes pride in elevating patient voices, partnering with researchers and invoking change in health care to improve the quality of life for those affected by stomach cancer.
Teresa co-founded My Gut Feeling with Katy Kosyachkova, a physician assistant in the Gastrointestinal Clinic at Princess Margaret Cancer Centre.
Nov. 30 is Stomach Cancer Awareness Day
Katy sees first-hand just how important it is for patients to be supported and heard. As a cancer without widespread public awareness, a lack of funding for research and virtually no support systems in place, many stomach cancer patients struggle to find support and educational resources when diagnosed, she says.
"We have patients, survivors and caregivers working with physicians to educate them about how to provide more supportive care, which I think is very unique for an organization like this," Katy says.
My Gut Feeling facilitates conferences where new research findings and patient experiences are shared with specialists in other countries, improving care not only locally, but globally. The work they're doing also aims to challenge stigmas in other regions where discussions around cancer are considered taboo.
Now, more than 150 sites around the world will light up periwinkle, the colour for stomach cancer, on Nov. 30 for Stomach Cancer Awareness Day, including Italy's Leaning Tower of Pisa and the Kyoto Tower in Japan. That total is 144 more sites shining for the occasion than just six years ago.
"Without the advocacy of My Gut Feeling, none of this would be possible," Katy says.
While stomach cancer was the diagnosis that impacted Teresa's life the most and inspired her to create My Gut Feeling, she's had seven separate run-ins with cancer.
Her stomach cancer diagnosis led to the discovery that she has Lynch syndrome, a genetic condition that increases the risk of getting certain cancers, particularly the colorectal and endometrial type.
As part of her commitment to advocacy, Teresa is both a patient and a patient advocate who is participating in one of the three winning grants: a clinical trial of a blood test developed by the CHARM Consortium, a group of geneticists from across Canada led by Dr. Trevor Pugh, a Senior Scientist at Princess Margaret Cancer Centre.
'Energy and tenacity of our patient partners motivated us'
The trial will attempt to check for signs of malignancy in the blood samples of patients with genetic mutations that predispose them to getting cancer, in hopes of improving early detection for those most at risk – people such as Teresa.
"It's a paradigm shift for laboratory research," says Dr. Pugh, emphasizing that Teresa helped design not only the funding program but also the research model used in the CHARM Consortium's application.
"We've never had a call for a grant before that had patients so deeply involved in the study design and implementation from the beginning," he says.
Dr. Pugh says it's exciting to go from studying stored samples in a lab, to reporting back blood test results to patients in real time, four times a year, in this new prospective study.
"The energy and tenacity of our patient partners motivated us to go for it," he says.
Teresa recalls, at one point in her life, not thinking it was possible to survive without a stomach.
Now, as a 12-year stomach cancer survivor, Teresa thrives knowing she's using her lived experience to help others going through the same.
"Too many people don't survive this disease, so I'm very grateful that I'm still here," Teresa says, noting it wouldn't have been possible without the help of her health care team, who have been champions for the patient cause every step of the way.
"Doing the volunteer work we do gives me purpose," she says.
"We are here so no one has to go through the stomach cancer journey alone ever again."