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'My world stopped': What it's like to learn you have cancer from a message on your phone

'My world stopped': What it's like to learn you have cancer from a message on your phone

CBC
Friday, September 27, 2024 08:17:44 AM UTC

When Beth Marchant opened the email announcing that her ultrasound results were ready, the then-32-year-old was floored to discover it contained a breast cancer diagnosis. 

"I saw the word carcinoma," Marchant said in an interview in her home in Cambridge, Ont. "In an email — that's not how you want to find out that you have stage 3 breast cancer."

Jénnelle Johnson — also in her 30s — had a similar experience when she created her account on MyChart, one of the most widely used patient data apps in Canada. 

"I logged in … and then that's when I saw 'invasive ductal carcinoma,'" said Johnson, who lives in Hamilton, Ont. "My world stopped."

As more Canadians get online access to the results of their medical tests, what Johnson and Marchant went through reveals an emerging concern: people learning about a life-changing diagnosis on a screen, without a doctor there to explain it — and sometimes alone.

"When a patient finds out that way, it's heartbreaking," said Dr. Mojola Omole, a surgical oncologist in Toronto. 

Omole said when patients receive a cancer diagnosis, it's important that a health-care professional is with them to explain the next steps and their prognosis. 

"Without that, people are just lost, and that's really not fair," Omole said. "That's not good patient care." 

While hospitals and labs that offer online health portals can control the timing of when certain test results are released to patients, there appear to be no consistent policies across Canada about the virtual delivery of medical bad news. 

Dr. Kimberly Wintemute, a family physician at the South East Toronto Family Health Team, said when a patient gets a new diagnosis, they typically have questions that can't be answered by a few words in a test result. 

"I think the hospitals have a responsibility to work with patients to prevent these kinds of events from happening, where people get difficult results in a lonely circumstance without context," said Wintemute in an interview.  

Officials with Epic, the Wisconsin-based company behind MyChart, said that hospitals can tailor the platform to hold back the results of certain tests until a doctor gives the green light. 

But not all hospitals do so. 

There are some that put the onus on the patient to decide which test results they want to get online. 

Read full story on CBC
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