She had 80% of her stomach removed because of cancer. Here's what she wants you to know

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By the time she was 44, Teresa Tiano was already intimately familiar with cancer. Not only was she treated for stage 0 bladder cancer eight years earlier, but she had also lost both parents to cancer. In July 2011, she became concerned she would follow in her father's footsteps and develop colon cancer. Although she was younger than the recommended age to begin colon cancer screening, she asked her healthcare providers to book her both an endoscopy and colonoscopy.

As she sat in the waiting room after the tests, she knew something was wrong. Once a nurse ushered her into a private room she received a cancer diagnosis — but not the kind she was expecting.

"He said, 'I don't know how to tell you this, but you have stomach cancer,"’ Tiano, now 57, tells Yahoo Canada.

She was diagnosed with stage 2 adenocarcinoma, a solid tumour that had grown from an ulcer, which had been detected alongside thickening of her colon wall in a prior CT scan.

"He painted a very dark picture of what I would be facing," Tiano recalls.

Stomach cancer (also known as gastric cancer) is a rare form of cancer that affects approximately 4,100 Canadians per year, with a five-year net survival rate of 29 per cent.

"You start Googling it and the numbers are horrific," she says. "There was a lot of emotional upheaval for me and for my family."

Learning to live without a stomach

Gastric cancers can be slow growing — and may not cause any symptoms until it spreads to other areas of the body. When there are symptoms like abdominal discomfort, fatigue, bloating, heartburn and indigestion, they can often be misdiagnosed as other ailments. Other symptoms that could be signs of stomach cancer include unexplained weight loss, nausea, vomiting and vomit that looks like coffee grounds, dark stool, blood in the stool and fluid build up in the abdomen (ascites).

Ten days after learning of her stomach cancer diagnosis, Tiano had 80 per cent of her stomach removed during a nine-hour surgery.

"It's very possible to live with no stomach, and very possible to live with a partial stomach," said Dr. Christine Brezden-Masley. The medical oncologist with St. Michael's Hospital and associate professor with the University of Toronto was part of Tiano's treatment team. Brezden-Masley says surgeons construct a new pathway for food, and although the "stomach will evolve, it will never be the same as the original stomach."

The surgery completely changed the way Tiano interacted with food, which presented its own set of new health concerns, including the risk of malnutrition. As Brezden-Masley explains, micronutrient absorption is a key concern following a partial or full gastrectomy, specifically iron and vitamin B12, which need to be consistently tested and replenished. Dietitians and nutritionists are essential to teaching patients how to "use food like medicine" by eating smaller meals routinely to expand the new stomach over time.

Tiano began losing weight almost immediately following her surgery. "I survived on mashed potatoes, rice and eggs. I could eat chicken but very tiny, tiny portions," she said. While it's improved, she says she still deals with restrictions.

Tiano used to "love to go to restaurants" but after her surgery, she's been afraid to.

"I always had to make sure I knew where the bathroom was. Nine times out of 10 I would throw up. Even on my first Christmas, I could eat next to nothing. By the afternoon, I was just completely done in, and had to go rest. I was just out for about a week in terms of exhaustion."

Many stomach cancer patients experience Dumping Syndrome, caused by food moving too rapidly from your stomach to the upper part of the small intestine, the duodenum, and can cause vomiting, diarrhea or fatigue very quickly after eating.

Living with Lynch syndrome

Two years after her father's death from colon cancer, Tiano's mother, 59 at the time, died from brain cancer. That family history, combined with her own cancers, raised concerns with her team — who suggested genetic testing.

In February 2012 — two months into her treatment, Tiano was told she had Lynch Syndrome, a rare genetic condition that increases the risk of developing cancers — including colorectal, brain cancer, prostate, liver and small intestine.

After meeting with a genetic counsellor, Tiano learned Lynch syndrome was likely inherited from the maternal side of her family. This left her with the daunting prospect of having to tell her siblings and family members that they might also have it.

"A part of me felt responsible even though I wasn't," Tiano said. "I was giving people this news — if you find out you have a genetic mutation it'll make you really high risk for cancer. I went swirling into a deep anxiety and depression for about three or four months where I could not be left alone. I thought everyone in my world was going to die. Everything became so dark."

Because Lynch Syndrome can also cause uterine and ovarian cancer, doctors recommended Tiano receive a prophylactic full hysterectomy at 45 — which also put her into menopause.

"I was losing body parts," she says. "Even though I had no intention of having children, when the choice is not yours, it's really difficult."

Trusting her gut

Tiano learned quickly after receiving her diagnosis that there were limited resources for stomach cancer patients in Canada. In 2011, she met 21-year-old Katy Kosyachkova, who had also had stomach cancer. The pair became each other's support system, and in 2016, founded My Gut Feeling, also known as the Stomach Cancer Foundation of Canada.

"Stomach cancer eats away at you... it affects everybody. Not just the patient, but their caregivers, their families because it's this overall change ... We don't want anyone to be alone in their journey," Tiano explains.

Tiano credits Brezden-Masley, who has moved beyond her doctor to her mentor, with helping form My Gut Feeling.

"There's so much support to give patients about treatment of the disease and about nutrition and about psychological support for both patient and caregivers," Brezden-Masley, who acts on My Gut Feeling's Board of directors.

Tiano also runs virtual groups for people living with stomach cancer across the country— and provides support to their families for those who are no longer here. It's also become a go-to resource for people who have been discharged from their doctor's care but require community and support as they live with cancer and its after-effects both physically and emotionally.

"Cancer never leaves you. It has a really high recurrence rate," she says. "People ask, 'How are you going to live without a stomach?' It's a journey and that journey never ends."

My Gut Feeling has participated internationally at the Gastric Cancer Conference and helped secure a $1.3 million grant over five years to study the nutritional requirements of stomach cancer patients.

The lack of resources and research for stomach cancer has earned the illness the moniker of "the orphan cancer." Although there are more targeted therapies that have improved the life-span of patients, there are still hurdles to overcome, including awareness.

An on-going battle and commitment

In 2020, Tiano was diagnosed with ureter cancer and underwent a surgery to remove her ureter (the tube that carries urine from the kidney to the bladder) as well as her right kidney. She also went through another round of chemotherapy. Her latest diagnosis encouraged her to focus even more on My Gut Feeling and raising awareness for rare cancers.

Now, Tiano hopes people who may be experiencing signs and symptoms of stomach cancer (acid reflux, abdominal pain, bloody or dark stool, loss of appetite) will advocate for themselves, and push their doctors to book them an endoscopy or colonoscopy.

"We tell people not to take 'no' for an answer," she says. "With stomach cancer, a month can be the difference between stage 2 and stage 4 [cancer]."

The lasting effects of cancer and the hurdles people face after treatment is something she hopes people will come to understand.

"I haven't been 'good,'" Tiano says of the realities of her life post stomach cancer. "I've had good days but there's not a day goes by that I don't have an upset stomach or digestive issue or something or I'm tired. But I'm here, I'm here and I'm thrilled to be here."

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