Public needs to be more aware of challenges faced by oral cancer patients, UAlberta researcher says

A new study led by the Institute for Reconstructive Sciences in Medicine (iRSM) is raising awareness of patients' quality of life after partial glossectomy

Amanda McCarthy - 04 December 2017

Imagine if you had to have your tongue removed because of cancer. And then imagine being judged for it, where people think you're constantly drunk, or just plain unintelligent, because of your slurred speech.

This is common and typical for the 4,700 Canadians who are diagnosed with oral cancer each year-Canadians like Kimberly Flowers.

"I was diagnosed with tongue cancer in July 2014. After numerous consultations, the decision was made to proceed with a glossectomy where they removed a third of my tongue.

From there on out, every aspect of my life was impacted. I could not speak, I could not eat. I was completely dependent on the nursing staff, friends and family for basic functioning. So it was extremely frustrating when I could not communicate my needs effectively."

Eventually, Flowers was able to speak, but she was still very difficult to understand.

"There were numerous times during interactions where people would start speaking slower and louder at me. This caused me to be much more judgmental of myself as well."

But Flowers isn't the only one who has felt the societal impact of cancer.

A new University of Alberta study led by the Institute for Reconstructive Sciences in Medicine (iRSM) looked at functional and quality of life when it comes to patients who have undergone a partial glossectomy-removal of part of the tongue. And while iRSM works to reconstruct the parts of the tongue that have been removed, they also want to spread awareness about the challenges that are faced by patients who have had the treatment.

"Patients across the globe are all facing similar challenges when it comes to head and neck cancer, especially during the treatment phase," says Daniel Aalto, research scientist at the Institute for Reconstructive Sciences in Medicine (iRSM) and assistant professor in the Department of Communication Sciences and Disorders, Faculty of Rehabilitation Medicine, University of Alberta. "We wanted to gauge the severity of issues being experienced by these patients, and we were able to do that by asking a series of questions ranging from swallowing and speech to pain and sexuality.

In order to improve patients' quality of life, people need to simply be less judgmental and check their biases. It is easy to perceive abnormal speech as 'weird' or even unacceptable, but we must remember that this is a side effect of treatment."

Patients from Edmonton, New York and Turku took part in the study, which aims to shed light on the patient experience during oral cancer treatment, including post-reconstruction of the tongue.

The study, which collected answers from over 100 participants, shows that speech function is reduced one to six months after surgery, and can bounce back to more normal speech patterns around the one year mark, with stats similar for swallowing and chewing functions. The data clearly showed that dry mouth is a problem for patients that undergo radiation treatment. To counter that problem, surgeons and radiation oncologists work together to spare the salivary glands. Patients also reported less pain after the treatment.

"We want to increase public awareness about this cancer to support patients living with the consequences of the disease and its treatment," says Aalto. "Because we're dealing with a full or partial removal of the tongue in some of these cases, the speech, swallowing and chewing functions can all be affected. And this may lead to the patient becoming unintelligible, which, unfortunately, can lead to situations of unjustified judgement."

Although recovery from a full or partial glossectomy starts immediately after surgery, it can take several years for function to improve as the nerves repopulate the reconstructed portion of the tongue. Which is why Aalto believes that in order to improve patients' quality of life during this time, society needs to be more sensitive to individual challenges.

And Flowers agrees.

"I would always have to preface every conversation with 'I have a speech impairment so if you have difficulty understanding me please ask me to repeat myself, I'll be happy to do that.' I did this because I was so self-conscious that people would presume I had a cognitive dysfunction versus just a speech dysfunction. If there was more education surrounding these types of cancers and the challenges they come with, cancer survivors may not have to put themselves in those uncomfortable positions."

But while the public needs to be sensitive to challenges faced by head and neck cancer survivors, Aalto believes that the research community needs to play a part as well.

"In addition to public education, the research community also needs to be sensitive to the functional impact of cancer treatment so that the quality of life after treatment is included in the decision making process between patient and physician.

Everyone wants to live a good life. Everyone wants to have control over their speech, over their swallowing and chewing. Together with public and physician education, we can make that happen."