Fear and frustration for cancer patients caught in Ontario's surgery backlog

Paige Atherton does her best every day to distract herself. For the 28-year-old mother from Beachburg, Ont., that usually means playing with her three young sons. But every so often, reality sneaks in.

"When are you going to see the doctor and when are they going to fix your belly?" Atherton said her five-year-old will ask.

"My response to him is, 'We need the surgery and then mommy will be OK."

Atherton was diagnosed with Stage 4 appendix cancer late last year. She needs surgery, but no date has been set.

"I feel like at any time this cancer can decide to start spreading," Atherton said. "So for me, it's a lot of frustration and a lot of anxiety, not knowing what's really going on."

Atherton is not alone. Spurred by the pandemic, Ontario's surgery backlog is estimated at more than 257,000 cases and growing. The province instructed hospitals last month to suspend procedures deemed non-urgent to spare ICU beds as COVID-19 cases climbed. A similar move was made in the pandemic's first wave.

The affected surgeries range from minor procedures to some cancer resections. Thousands of Ontarians are waiting for various appointments, leaving many people concerned about how the province will ever catch up.

Atherton says the Ontario government should have done more to ensure those requiring potentially life-saving procedures wouldn't have to wait.

"It's a lot to navigate a cancer diagnosis to begin with," she said. "But with delayed surgeries, it just adds a whole other aspect to the journey."

'Cancer care needs to be timely'

Ontario Health, the Crown agency created in 2019 to co-ordinate the province's health-care system, said it could not provide the specific number of surgeries delayed due to the pandemic. But it did share comparative data on surgeries completed before COVID-19 struck and in the months that followed.

From March 15, 2020, to May 2, 2021, there were 232,574 fewer surgeries carried out overall than during the same period pre-pandemic. There were 6,225 fewer adult oncology surgeries.

From Jan. 1, 2021, to April 30, there were 42,052 fewer surgeries completed than during the same period in 2019.

There have been 16,148 adult oncology surgeries performed from January to the end of April this year despite the pressures of the third wave, but that's still 525 fewer cancer surgeries than in the same timeframe pre-pandemic.

In those days, Dr. Shady Ashamalla, a surgical oncologist in Toronto, said he would be able to give patients an exact date or specific timeline for surgery. That's often impossible now, he said.

"We're really stuck kind of telling people, 'We are going to do our best,'" he said. "But that's not enough. If you have cancer, that's not enough to finish that visit and feel reassured that this is all going to be handled in a timely way."

It was feared Ontario would be forced to invoke a formal triage protocol to determine which patients would get access to scarce ICU beds due to the strain of the third wave of COVID-19.

The province has seemingly skirted that dire scenario, but Ashamalla says delaying cancer surgeries is also a form of triage.

"What really terrifies us the most is that we know cancer care needs to be timely," he said. "And a lot of those timelines are not being met right now across the province of Ontario.

"People are terrified and they're overwhelmed."

'We've traded one crisis for another'

Paul Ricardo of Mississauga is among those who are frustrated. The 59-year-old says he was scheduled to have surgery for prostate cancer on April 23.

It was cancelled the week prior, after Ontario Health sent a memo, obtained by CBC News, to hospitals instructing them to stop performing all but emergency and life-saving procedures.

A similar directive was issued days later by Dr. David Williams, Ontario's chief medical officer of health. It leaves it up to individual doctors to determine which surgeries are most urgent.

"To have the rug pulled from under you, to say that you can't move forward with your treatment, is fairly devastating," Ricardo said. "Cancer doesn't wait for anything."

Ricardo argues the government of Premier Doug Ford should have done more sooner to increase ICU capacity, as modelling released earlier this year predicted a critical care crunch in the event of a third wave.

Despite those projections, the Ford government began easing public health restrictions in mid-February against the advice of Ontario's COVID-19 science table.

"It didn't divert the crisis," Ricardo said. "We're in the middle of it. Everybody said we'd be. And it didn't mitigate it."

Ricardo praises health-care workers for doing everything they can, but questions why the government didn't request military or out-of-province health support sooner.

He wonders if a more proactive approach from the province would have allowed his surgery to go ahead as scheduled, and he's concerned not enough is being done now to ramp up procedures once the pandemic wanes.

"We've traded one crisis for another," he said.

Catching up

The Ontario government pledged $300 million in its 2021 budget to help reduce the surgical backlog.

"We are watching on a daily basis until we can start to perform these surgeries again," Health Minister Christine Elliott said earlier this week.

But catching up on the backlog will be a herculean task for health-care workers, who are already under incredible strain, and it remains unclear how quickly they'll be able to do it.

"It's really getting out of crisis first, then we can start to think about what the next phase looks like," said Dr. Chris Simpson, executive vice-president (medical) at Ontario Health.

"We're going to have to run at a rate of surgeries and procedures that's at 110, 120 per cent of our usual rate of these things for some time if we're going to hope to catch up."

Ashamalla said doctors need to determine those patients "whose prognosis is going to change immediately" and get them to operating rooms first.

But that's a lot of pressure on clinicians, he said.

"The danger and the fear of every oncologist is that we don't know exactly," he said. "We don't have great evidence to know what is safe and what is not in terms of these delays."

Key to being able to catch up, according to Simpson, is the Ontario government avoiding a premature easing of public health restrictions in place to slow the spread of COVID-19, which public health experts have accused the province of doing at the end of the second wave.

"My biggest fear is that we're going to open up sooner than our health-care system is ready for," Simpson said. "What we can't lose sight of is how close we came to the apocalypse this time."

Wait and hope

Atherton and Ricardo are trying not to lose sight of hope despite the uncertainty that plagues them and their families as they wait anxiously for their surgery dates.

"Right now, we're in a wait and hope pattern," Ricardo said. "You just have to try to be positive and hope ... that change comes in time before things get worse."

Both have turned into activists, pressuring the Ford government to do all it can to ensure cancer patients caught in the backlog are treated as soon as possible.

"What are we going to do to prevent more people from dying?" Ricardo asked. "What are we going to do to prevent more people from having shorter lifespans because their cancer wasn't treated in time?"

Atherton said she's looking forward to the day when her sons no longer need to ask when she will have surgery.

"Just to finally have a date and to have that kind of hope that this whole journey is going to start coming to an end soon, I think it will just be a big sigh of relief."

One that can't come soon enough.