'It was that or go home and prepare to die': Canadians on why they sought surgery outside the country

CTV National News: Canada's health care backlog Judy Trinh has the latest on Canadians travelling to the U.S., abroad to avoid delays at hospitals for medical care.

“You're too ill. We can't operate.”

Those were the words Allison Ducluzeau, 57, said she was told in January, a month after being diagnosed with a rare and terminal abdominal cancer.

After several weeks of consultations and inconclusive tests, the British Columbia resident said a surgeon told her she was not eligible for surgery and she might only have between two months and two years left to live.

“I felt completely hopeless and powerless and (at) a complete loss about what to do with my health,” Ducluzeau told CTVNews.ca in a phone interview on Saturday.

Ducluzeau started researching options to tackle her illness within Canada and found out she required a time-sensitive, specialized surgery to treat her Stage 4 cancer. That's when her general practitioner referred her to cancer specialists.

From there, she was told she would have to wait almost two months for an initial consultation with a specialized surgeon in Vancouver.

But she'd been told she might only survive another two months, suggesting the consultation might be too late.

So, the mother of two started looking for options outside of the country.

Ducluzeau eventually landed on the Mercy Medical Center in Baltimore, Md., where she met with a specialist one week after sending the results of an imaging test that detects early signs of cancer. She was told she could have the abdominal surgery done two weeks later.

Her husband accompanied her on the trip in February, for the procedure she described as her last resort.

After the surgery in the U.S., Ducluzeau said she learned that if she had stayed in Canada, waiting to meet with the Vancouver surgeon, there would have been a wait of six to eight weeks to have the operation done in Vancouver, in addition to the two months she had to wait for the consultation.

By her calculations, she believes she had surgery approximately three months earlier than the best-case scenario in B.C., because of her trip to the States.

And based on the timeline given to her when she was diagnosed, she may not have survived long enough to have the surgery in Canada.

“I never should have had to travel away from the support of family and friends,” said Ducluzeau. “But (there) was not an alternative. It was that or go home and prepare to die.”

Ducluzea's experience is not unique. With long wait times becoming a defining characteristic of Canada's health-care system, many Canadians are taking matters into their own hands by travelling outside of the country to get surgeries and other medical procedures done sooner.

HOW LONG IS THE WAIT?

Each province and territory is responsible for administrating and delivering health care to its residents, meaning the average wait times for surgeries and other procedures vary across the country.

The pan-Canadian benchmark for a hip replacement surgery is 26 weeks, or 182 days, according to the Canadian Institute for Health Information. But based on the provinces' and territories' own electronic wait time estimates, most patients wait longer than that.

Ontario had the lowest waiting times, based on these trackers, with an average of 87 days between the time of referral to the first consultation, and 138 days for hip surgery.

Some of the provinces did not provide a clear average, but instead included a 90th percentile measurement reflecting the amount of time it took for nine-in-10 patients to have had their treatment.

B.C. and Newfoundland and Labrador indicated nine in 10 patients had their hip surgery within 348 and 385 days, respectively. In Saskatchewan, it took 340 days to reach this milestone.

Nova Scotia's data collected over the first half of the year suggested it took 606 days to reach this 90-per-cent marker. It is unclear from the data available how many patients had to wait that long.

In Alberta, data suggests 90 per cent of patients are treated within 80 weeks or 560 days.

'ONCE YOU START WAITING, OTHER THINGS START TO BREAK DOWN'

For Edmonton resident Trevor Bukieda, 60, waiting for surgery meant enduring agonizing pain.

Bukieda said he started feeling pain in his hip four years ago. The initial X-rays and ultrasound showed minor joint wear, so after a cortisone injection, he continued on with his life. But he said the pain intensified and became unbearable in March of this year.

He had new X-rays done, which he says showed that his hip had totally degenerated, and there was no cartilage left at all.

In an attempt to ease the pain, Bukieda said, he contacted an Alberta clinic that specializes in hips and knees in hopes of having his injury treated. Three weeks later, he said, he received a letter saying he had been accepted for an appointment to see a surgeon in 14 to 16 months. The actual hip replacement surgery would've taken another nine months' wait, he told CTVNews.ca.

Losing patience, Bukieda started looking for out-of-country options and found a clinic in Kaunas, Lithuania, that could take him in as soon as July, three months after his most recent X-rays.

“The biggest reason why I chose to go overseas is because once you start waiting, other things start to break down in your system,” Bukieda said.

Before the surgery, Bukieda said, his joints were getting worse as the balance compensation to avoid pain in his left hip started to affect both of his knees and other hip.

Sarunas Tarasevicius, hip surgeon and head of orthopedics at Nordorthopaedics in Lithuania, said this is common; the quality of life of a patient worsens the longer they wait for surgery.

“Those patients who are operated on later need more effort to make those muscles work again properly,” he said. “And the recovery might be significantly slower compared to those who had surgery done on time.”

Tarasevicius told CTVNews.ca in an interview that his clinic welcomes at least 10 Canadians each month for surgery, and he is expecting a 40 per cent increase in Canadian patient volumes this year.

Bukieda's hip replacement surgery in Lithuania fortunately went well and he is now recovering in his home in Edmonton. In total, he said he spent 10 nights overseas and paid approximately $12,862 for the surgery.

HEALTH CANADA CITES PANDEMIC BACKLOG

In an emailed statement, a spokesperson for Health Canada told CTVNews.ca that there are many pressing needs in the health-care system including addressing backlogs that were exacerbated by the COVID-19 pandemic.

Last year's wait times for medically necessary treatments were the longest ever recorded by a Fraser Institute survey, which found a 196 per cent increase in wait times from two decades ago.

Canadians had to wait a median of 27.4 weeks between the referral from a general practitioner and receiving treatment in 2022, the survey found. By comparison, they waited just 9.3 weeks in 1993.

In an attempt to reduce the wait times, Health Canada said the federal government is “working with provinces and territories to improve the collection, use and sharing of health information.”

Part of that work has included dedicating a $2-billion fund for provinces and territories to address immediate pressures on the health-care system, such as in pediatric hospitals and emergency rooms, as well as long wait times for surgeries, the department said, citing an announcement made in July.

“No one should have to travel abroad or to a different province and pay to receive the care they need in a timely manner,” Health Canada said in the statement.

'THIS IS MY LAST CHANCE'

For some Canadians, travelling outside of the country seems to be their last bit of hope.

Sena Gurbuz said she was nearly paralyzed because of back problems. For years, neurosurgeons could not come to a conclusion as to what was causing her pain.

“It got to the point where I had to buy a wheelchair,” Gurbuz told CTVNews.ca on Wednesday, explaining she could only sleep two hours a night.

Then, one day in December 2021, she started bleeding uncontrollably.

“The test showed I had polyps (small growths of excess tissue) in my uterus and they were precancerous,” she said. “My gynecologist at the time was freaking out because she didn't do the type of surgery I needed.”

After another round of tests, Gurbuz said, doctors told her she also had an umbilical hernia, meaning she was in need of three different surgeries — all with different wait times.

Wait times for these types of treatments too vary across the country. In Quebec, the average wait time for a gynecological surgery at the hospital closest to Gurbuz is between 11 and 15 weeks, according to provincial data, a timeframe that does not include the wait for consultation.

Orthopedic surgeries have an average wait of between 19 to 49 weeks, depending on the procedures.

Gurbuz said was given a two-year wait for the robotic surgery needed to remove the precancerous cells in her body.

“It was my ultimatum,” she said. “I'm either going to end up with cancer and it's going to be too late … and if I don't have back surgery I'm going to end up permanently in a wheelchair. That's what was going on in my head: 'This is my last chance.'”

Last August, Gurbuz and her girlfriend took out a loan, hired a medical visitor co-ordinator and booked a two-month trip to Istanbul, Turkiye, where Gurbuz had three different surgeries — two done on the same day and a third one month later.

“Everything went very well. I found the doctors and hospitals and staff all of the highest standard,” she told CTVNews.ca.

In total, Gurbuz said, the trip and surgeries cost her $50,000.

“I was able to walk without a cane after three days of back surgery,” she said.

While some Canadians report having successful stories abroad, the spokesperson for Health Canada stressed that there are “medical and financial risks” linked to receiving care outside of Canada.

“Before taking such a decision, we invite patients to consider the risks,” they said.