New study looks at quality of life for patients who have tongue partially removed because of cancer
Almost 5,000 Canadians every year get head and neck cancer
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It takes every bit of strength and concentration Kimberly Flowers has to do what most of us take for granted: to speak a simple sentence.
Three years ago doctors removed part of Flowers' tongue, after she was diagnosed with head and neck cancer, and replaced it with tissue from her arm.
She's since undergone a year of speech therapy, but must concentrate on every word.
"Imagine trying to speak to somebody, where you have a mouth full of peanut butter," she said.
Now local researchers are trying to capture the experiences of people like Flowers. The Institute for Reconstructive Sciences in Medicine (iRSM) partnered with the University of Alberta to interview more than 100 people who had undergone a partial glossectomy, or tongue removal.
The patients were spread out over three different hospitals, one in Edmonton, one in New York and another in Turku, Finland. Researchers asked them about their quality of life in different areas such as speech, eating and pain.
“What we found that right after surgery, that there is a decrease in many of these variables that we are looking at, like speech and eating function but then these functions improve with time,” said Daniel Aalto, a research scientist at iRSM.
Head and neck cancers are more common than breast cancer, but still affect about 4,700 people in Canada every year.
Flowers wants people to know how challenging the recovery can be.
After she underwent her partial glossectomy in October of 2014, she did radiation treatment and a year of speech and swallow therapy, and is now cancer-free. She can talk and eat, but it's not the same, she said.
“You have to really concentrate very, very hard on every word you’re saying because you’re trying to focus those muscles to make those sounds, so you’re very conscious of every effort you make,” she told Metro.
“As I sit here, I’m straining my muscles, I have to stay focused mentally, to make sure that I’m articulating.”
She said even now if she speaks too fast or is feeling tired, her words come out slurred.
“(It feels) very isolating,” she said. “And also very frustrating because as a patient you are thinking you want these thoughts out and you can’t.”
Not being able to speak easily affected her ability to complete simple tasks like shopping, she said.
Store employees would try to talk over her, fill in her words or guess what she was trying to say instead of patiently waiting for her to finish, she said.
Talking to customer service representatives on the phone was even worse.
“There has been times where I was hung up on because I was in the middle of trying to say something and they just thought it was dead air,” she said.
“And that’s hard because it takes away from your self confidence and it takes away from your self-esteem... but I’m still working through those things, I’m trying to be better with it.”
Aalto said now they're planning to study more patients in the future.