Delays in diagnosis and testing results are complicating Canadian cancer care: expert

Emmanuelle Langelier described the process leading to her husband’s cancer diagnosis as “ridiculous.”

A resident of Saint-Jean-sur-Richelieu, Que., about 40 kilometres southeast of Montreal, Langelier told CTVNews.ca she was confused by delays and complications that riddled his path to treatment.

It began in the summer of 2022, when her 38-year-old husband, Mathieu Lamontagne, experienced potential symptoms of colorectal cancer.

“He was suffering,” Langelier said. “He was going to the bathroom like four, five, six, seven, eight times a day, sometimes in the middle of the night. He wasn’t able to get any appointments. He had no prior medical issues. He was otherwise a healthy person.”

At first, Lamontagne faced difficulty gaining medical attention because he was not assigned to a general practitioner. Clinics booked up quickly, and the only other option was to go to a hospital emergency room, with typical wait times of 15 to 20 hours, Langelier explained.

Eventually, in July of 2022, Lamontagne was assigned to a clinic, guaranteeing an appointment with a doctor. After a consultation, the clinic collected stool and blood samples to investigate the problem.

“The stool samples came back with possible cancer indicators,” Langelier recalls.

Despite those concerning results, further tests weren’t carried out until October, when Lamontagne received an ultrasound, the results of which were inconclusive.

“After that, they said, ‘OK, we’ll get you a colonoscopy,'” Langelier said.

But Lamontagne would have to wait until December for the procedure.

A few days before Christmas, Lamontagne had an “emergency colonoscopy,” almost five months after potential cancer indicators were discovered in his stool.

“They saw it right away,” Langelier said. “They took the sample that they needed to take. They met with us, and said, ‘Sorry, this is obviously a rectal cancer.'”

But doctors told them Lamontagne would need more tests.

In January, five months after Lamontagne reported his symptoms to a doctor, it was determined that his tumour had metastasized to Stage 4, spreading to his lungs and nodules around his colon and rectum.

“That’s our health-care system in Quebec,” Langelier reflected. “These are the realities of it. Because when they consider that you have cancer, you go as a top priority, but there is still such a wait.”

Unfortunately, delays in testing are not exclusive to Quebec, as screening backlogs continue to overwhelm health-care systems across the country, according to a report by the Canadian Partnership Against Cancer (CPAC).

Hospitals across Canada have reported an overwhelming rise in patients with advanced-stage cancers and other life-limiting diseases, a trend that is at least partially due to inadequate screening of symptoms since March 2020.

According to CPAC, a backlog is created because patients aren’t being monitored, paradoxically due to the fact there are too many patients that need monitoring.

Resources are limited, and health-care systems remain overwhelmed, says Filomena Servidio-Italiano, president and CEO of Colorectal Cancer Research and Action Network (CCRAN), an organization that focuses on advocacy and education for Canadian cancer care. She says stories like Lamontagne’s are typical of young patients (in their 40s and younger).

“Early age onset colorectal cancer patients who are experiencing symptoms specific to colorectal cancer are, first and foremost, having a difficult time being diagnosed. Specifically because of their age,” Servidio-Italiano told CTVNews.ca in a phone interview.

“Symptoms are being dismissed because of their young age. A shortage in health-care human resources is delaying access to colonoscopy. We are experiencing a backlog due to pandemic catch-up. If a cancer is detected in a colonoscopy, then surgery is necessary but the wait times can be significant. But that’s assuming the patient is a surgical candidate.”

Oftentimes, she explained, symptoms are dismissed or attributed to other benign conditions. Servidio-Italiano said that, as a result, these patients’ cancers are caught in the later stages.

In Lamontagne’s case, however, delays in cancer care didn’t end with his initial diagnosis.

BIOMARKER TESTING

Biomarkers are measurable indicators that can provide insights on the biological characteristics of specific tumours, helping to inform cancer diagnosis, prognosis, treatment selection and monitoring, according to the CCRAN. The use of biomarker status, Servidio-Italiano explained, can identify which therapies a patients’ cancer may or may not respond to, “which, in turn, allows for the most optimal treatment plan for that patient.”

“We know that our advanced-stage cancer patients who receive treatments based on their tumour’s biology not only live longer but may also achieve a better quality of life,” she said.

In many cases, oncologists will remain in the dark about the most ideal therapeutic approach to cancer types until biomarker results are properly received, CCRAN reported.

In February of 2023, Lamontagne met with his oncologist, who explained that his biomarker tests were sent out and being processed. His oncologist also initiated a course of chemotherapy.

Langelier explained that a key factor in receiving the biomarker results came down to confirming whether Lamontagne would be eligible for a drug called Bevacizumab (also referred to as “Bev”), a medication that helps shrink certain tumours by starving cancer cells of nutrients that are needed for them to grow. Typically, oncologists wait until molecular results are received before prescribing it.

“The other thing that needs to be known is if he’s eligible for immunotherapy, and for that, they need the tumour’s biomarker testing results as well,” Langelier said.

For the first few months, Lamontagne’s oncologist did not receive biomarker results from the lab.

“What happened was the first sample that they sent was too small,” Langelier said. “So they had to send another sample.”

She said by March, no results had been received.

“April comes around, and I ask [the oncologist] again, ‘Did you get the results back?’ And they did not get the results back again. It seemed like they were kind of rummaging around, trying to figure out what was going on.”

Choosing not to waste anymore time, Lamontagne’s oncologist decided to prescribe Bev prematurely. His scans showed a positive response to the medication, but further biomarker data was still required to modify treatment specifically for his cancer type.

Langelier said her husband’s oncologist was equally frustrated and confused that the results did not come in.

“This isn’t normal,” Langelier said. “The first samples were sent in December. We were in April now.”

Eventually, data was received, but Langelier believes the delay was a result of Lamontagne’s file slipping “between the cracks.”

“Do you know how much stress that caused us?” she said.

ROADBLOCKS TO BIOMARKER TESTING RESULTS

In June, CCRAN hosted a virtual conference to kick off an education series and a research advocacy program on timely access to advanced testing.

Monika Slovinec-D’Angelo, chief research officer at the CRAAN, said in the opening remarks of this virtual conference that the organization has decided to expand its educational mandate beyond colorectal cancer.

“This was in recognition of the fact that biomarker testing access challenges are common across multiple tumour types, and that there are systemic challenges that impact clinical care and patient care pathways across Canadian jurisdictions,” she said.

Dr. Stephanie Snow, a medical oncologist at QEII Health Sciences Centre in Halifax and the conference chair of CCRAN, explained that molecular and biomarking testing is applicable to all advanced cancer patients.

“Molecular testing allows us to prescribe individualized therapy. And when we understand and know as much as we can about a cancer, we can recommend and provide the treatment that is going to work best for that person’s cancer,” she said.

“It might be that they have a cancer at the exact same anatomical part of their body as the next patient coming in right after them, but their best treatment might be different based on those molecular test results.”

Molecular testing, Snow says, is a key part of improving Canada’s health-care system, but many Canadians still struggle to access it.

In November of 2021, CCRAN launched an online tool called My CRC Consultant. It’s a 13-question survey that generates a 39-page report, outlining potential therapeutic options based on the user’s tumour’s biomarker status.

In autumn 2022, CCRAN reviewed data from the online tool, and learned that 40 per cent of the more than 300 patients who attempted to use it could not complete the questionnaire.

As Servidio-Italiano explained, “We discovered that patients were not in possession of their tumour’s biomarker status. They had no report in hand.”

After learning this, CCRAN and other cancer patient advocacy organizations identified key reasons why biomarker information and diagnosis insights remain inaccessible to Canadians.

Some of these reasons include a lack of clinical awareness on the value of molecular testing, a lack of funding for molecular processing and larger institutional barriers — which vary in each province. Responses were summarized by Servidio-Italiano during the virtual conference, and elaborated on by a panel of the organizations’ representatives.

According to Breast Cancer Canada (BCC), all molecular testing is mandated in most provinces by medical oncologists. A surgical oncologist, therefore, is not allowed to order molecular testing while that patient is recovering from surgery. BCC believes this should change, so molecular testing results can be available at the time of the first consultation with a radiation or medical oncologist, instead of patients needing to wait until after their first appointment.

Lung Cancer Canada (LCC) said that most patients are “unaware that these tests exist. Therefore, they are not asking what their results are, what that means for them, and not asking if the tests were even performed.”

Costs are also a key factor in biomarker delays and access, according to the Canadian Cancer Survivor Network (CCSN). Canadian laboratories either cannot afford or are not technologically equipped to perform commercially developed companion diagnostic tests approved by regulatory authorities. Delays, they claim, can be a result of technological limitations with processing samples.

CCRAN reported that these organizations are calling for clearer guidelines on biomarker testing, as well as consistent provincial access and increased education on the benefits of precision medicine for clinicians as well as patients.

HOPE IN PRECISION MEDICINE

Servidio-Italiano said when her father was diagnosed with metastatic cancer back in 2006, specialized treatment options were almost non-existent.

“There was nothing available other than chemo. Just chemo. It was a daunting journey back then. Unfortunately, he succumbed to his journey very quickly, in less than three months. Today, this is a very different journey across multiple tumour types, not just colorectal cancer, but across multiple tumour types.”

On the phone, Serividio-Italiano cited a number of emerging therapeutics that can target the patient’s cancer more precisely. Many of these new promising options fall under the umbrella of “precision medicine,” an approach to disease treatment and prevention which accounts for the biological specificity of individual cases.

An example of what’s emerging within the avenue of precision medicine, Servidio-Italiano explained, is comprehensive genomic profiling, also known as “next-generation sequencing.” This is a biomedical diagnosis tool that allows molecular pathologists to sequence the DNA of tumours and evaluate gene abnormalities simultaneously, providing oncologists with valuable insights for tackling the biological complexity of specific cancers.

“Cancer nowadays is becoming more and more of a chronic disease as opposed to this death sentence that it used to be once upon a time,” Servidio-Italiano said. “It’s all because of precision medicine. There is so much to look forward to nowadays when a patient is delivered a cancer diagnosis, and it’s all because of this wonderful collaboration taking place between clinicians, researchers, patient-advocacy groups, pharma-partners. We’re doing so much to collect data, and analyze that data, and work in the best interest of patients and caregivers to improve that patient journey.”

Currently, Lamontagne is being treated with chemotherapy, Langelier explained.

Although there could be hope for clinical trials and emerging therapeutic options, she says she feels “powerless” when she sees him suffer.

“All I know is it’s stressful and my husband was suffering this whole time and nothing was done while he was suffering.”

“You have to be your own advocate,” she added. “You cannot take for granted that your doctor will be on top of everything. You have to be the one doing it.”