Around the end of June last year, Karen Townsend started to experience abdominal pain.
At the time, she could only book a phone appointment with her family physician in London, Ont. Suspecting she probably had irritable bowel syndrome (IBS), he prescribed medication and put her on a special diet.
When her symptoms hadn’t eased, her doctor ordered an ultrasound. But the test was too late. Townsend felt a hard spot in her abdomen, and her husband insisted she go to an urgent care centre immediately, where tests found a large mass later identified as Stage 2 ovarian cancer.
“It was absolutely devastating,” she told Dr. Brian Goldman, host of CBC Radio’s White Coat, Black Art.
Townsend said when she asked the urgent care doctor what would happen next, “He said, ‘Karen, we run as fast as we can.'”
By the time she had a definitive diagnosis, about two months had passed since Townsend first sought help.
As Canada begins to emerge from the third wave of the COVID-19 pandemic, specialists who work with cancer patients say they’re concerned they won’t be able to help everyone whose serious cancers have either gone undetected or been diagnosed late because of the crisis.
Changes to the way patient care is managed are needed to increase capacity and treat as many people as possible, including longer operating-room hours and a continued all-hands-on-deck approach from COVID-weary health-care workers, said Dr. Tony Eskander, a head and neck surgical oncologist at Sunnybrook Health Sciences Centre in Toronto.
Backlog expected to take years to address
While Townsend was able to receive surgery just a few weeks later, followed by chemo and radiation, she said she wonders whether her cancer could have been discovered earlier if she had initially been able to get an in-person appointment, where her abdomen could have been examined.
“I certainly think I had a delay in the diagnosis, you know, particularly sort of getting through the gate and getting my primary care physician to help me through this.”
With treatment, the five-year survival rate for Townsend’s type and stage of cancer is about 70 per cent.
Data on the number of patients presenting with more advanced cancers due to COVID-19 delays will not be available for another year or more, Eskander said.
But he told Goldman that among his oncology colleagues, there are “many stories of patients who either have not sought out medical attention because of fear of catching COVID from coming to the hospital” or patients who could only access virtual care.
As a result, physicians are seeing patients with more advanced cancers, Eskander said.
While there is no estimate of the size of the surgical backlog nationwide, in Quebec alone, where the provincial government announced a plan last week to tackle its long wait list, there are about 145,000 people waiting for surgeries. Health Minister Christian Dubé said it will take until March 2023 to get that number down to an even 100,000.
“It is heartbreaking for me,” said Dr. Lucy Gilbert, director of gynecological oncology at McGill University Health Centre in Montreal.
She said the surgeons meet with hospital leadership to assign limited operating room capacity to the patients in most critical need. “I present my case, and then there’s the head and neck [surgeon] saying that this person is near obstruction with tongue cancer, and then the vascular surgeon says, you know, this person may lose a limb.”
The Ontario Medical Association said last week the pandemic has left an estimated backlog of 15.9 million surgeries, diagnostic exams, screenings and other medical procedures in the province. “We’re talking of a recovery that’s in the years, not the weeks or months,” Eskander said.
Once the COVID-19 crisis eases enough to free up more resources, the job will entail not just working through the current surgical backlog but identifying the patients who are currently flying under the radar because they haven’t been in for CT scans, ultrasounds, colonoscopies, mammograms and Pap smears, he said.
“I do have some fear that I don’t know where these patients are. And I want the messaging to be clear that they should come into the hospital and seek medical attention. We’re open for business. It’s quite safe.”
Followup care recommended outside major centres
Eskander presented his ideas for increasing efficiency in cancer care to the federal government’s Parliamentary Health Research Caucus in May.
A change he’d like to see introduced that could help with the COVID-related backlog is to establish places outside of major cancer centres for patients to receive followup care closer to home, freeing capacity at major cancer hospitals to treat more patients.
“Many types of cancers … require very specialized care at designated centres,” Eskander said. “The issue with that is patients tend to travel from really far away to come to those designated centres, very appropriately, because that is where that expertise lies.”
But when they need care for things such as pain management or problems with feeding tubes, it would be better for patients and more efficient to handle those issues outside of major cancer hospitals, he said.
“The analogy I like to use is that of the collision centre. So if you get into a fender-bender in Sudbury, you’re not going to drive all the way to Toronto to come to your nearest collision centre…. You have to go to the nearest collision centre near Sudbury to report that accident.”
That approach leaves a bed in a major cancer hospital free for a person who has been waiting for surgery, he said.
Eskander said he would also like to see a centralized intake of referrals and assign those to the surgeons who have capacity.
“What’s currently happening is certain groups of family physicians tend to refer to a very specific group of specialists, who then manage those patients, and some of them will have longer wait lists than others.”
While Eskander said he thinks he and many of his colleagues would be willing to put in some overtime to get through the backlog, there will be some human resources limitations — both with the professionals needed to perform cancer screening tests and those needed to keep operating rooms open longer. Some of these fields had labour shortages before and, adding to that, many health-care workers are burned out from the pandemic.
“The one I think of the most is really our nursing colleagues who have been hit really hard during this pandemic, who have worked exceptionally challenging hours and in challenging conditions,” he said.
WATCH | Backlog forces patients to wait for surgery that could save their lives:
COVID-19 ‘a huge part’ in late diagnosis
Anna Whitely can’t help but wonder if things could have been different had COVID-19 not changed access to care for her father, Mark French, who died on April 1, just five weeks after being diagnosed with pancreatic cancer.
The phone appointments he could get when he first started to feel unwell last fall didn’t get to the bottom of things, Whitely said. When her dad was seen in person, restrictions on visitors at clinics and hospitals meant it was without his wife or daughter to advocate for the 88-year-old.
“Sometimes he was unable to understand what they were talking about, and we never got the full story after his tests or after his doctor visits,” she said.
“My mom would have to try and follow up with phone calls to the doctor’s office and try to get an update, to see what the next steps were for him.”
In November, French, who lived in Prince George, B.C., and was part of Takla Lake First Nation, ended up hospitalized for 17 days to treat problems with his lungs.
But it wasn’t until Whitely suggested her mom send a note with her father to his next appointment requesting a test for pancreatic cancer — she’d lost a supervisor to the deadly disease in the past and noticed a similarity in symptoms — that the test was conducted.
“I think COVID played a huge part in his late diagnosis,” she said.
“I’m sure if my mom or if someone was able to go in with him and advocate for different testing, that could have possibly been done, I think having his diagnosis earlier would definitely have changed the outcome or prolonged his life, at least for a while.”
Written by Brandie Weikle. Produced by Amina Zafar and Jeff Goodes.