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Carolyn Holland can’t help but wonder how many years of her life she has lost because her breast cancer was diagnosed late.

The Ottawa mother first discovered lumps in her breasts while in the shower. Aged 43, she had never had a mammogram.

After seeing her doctor, she was sent for a scan, which confirmed the cancer. But at that point he had already moved on. Holland required two types of chemotherapy, radiation, removal of her lymph nodes and a double mastectomy.

This should not happen to other women. It can be prevented, Holland said.

Holland’s doctors told her that her treatment could have been less drastic if the cancer had been detected earlier. But Canadian national guidelines do not recommend routine breast cancer screening for women under the age of 50.

If I had been able to access screening at 40, this would not have been the outcome for me, she said.

A group of medical experts say Canadian lives are at risk because family doctors are using outdated guidelines to decide whether, and when, to send their patients for routine cancer screening.

The guidelines are published by the Canadian Task Force on Preventive Health Care (new window), an arm’s length panel of 15 physicians and other primary care providers established by the federal government. The independent volunteer panel examines the research on screening and prevention of various illnesses, including cancer.

These guidelines affect millions of Canadians. The consequences are serious. Current taskforce guidelines often limit access to essential life-saving screening, said Dr. Shiela Appavoo, an Edmonton radiologist.

She is with the Coalition for Responsible Healthcare Guidelines, a group of cancer experts, family doctors and patients calling for changes to the way the guidelines are created.

The coalition says the taskforce uses outdated research, doesn’t properly take expert advice and is far too slow to update its recommendations.

GPs are taught to follow national guidelines

The taskforce’s breast cancer screening guidelines are due to be updated next month. The current recommendations (new window)last updated in 2018, recommends against widespread screening of women in their 40s.

The Canadian Cancer Society withdrew its support for the guidelines in December 2022, citing concerns that they did not keep up with new research, particularly the increasing number of cancer cases (new window) in younger populations worldwide. The latest statistics (new window) showed that the most frequently diagnosed cancer among Canadians between the ages of 30 and 49 is breast cancer.

WATCH | Cancer screening guidelines are out of date, say experts:

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Canada’s cancer screening guidelines are out of date, doctors say

A group of cancer experts say Canada’s national screening guidelines are a decade out of date, leading to people being diagnosed later, when they are harder to treat.

Many states have ignored the task force’s guidelines by lowering the age at which they offer breast cancer screening to include women in their 40s.

British Columbia (new window)Nova Scotia (new window)PEI (new window). and Yukon (new window) all allow women to access routine mammograms in their 40s. Alberta (new window) and the Northwest Territories (new window) start screenings at 45. Ontario will begin covering screening mammograms (new window) for women in their 40s this fall.

Although some states have expanded screening eligibility to younger women, many doctors may still not send their patients for the test because national guidelines recommend against it, Appavoo said.

Unfortunately, many GPs are educated and trained to follow the task force’s guidelines, Appavoo said.

That’s a problem, he says, because a patient is most likely to go for a cancer screening if their doctor recommends it.

It is therefore very important to give appropriate and sufficient information to GPs about who to screen and when to screen, Appavoo said.

  • Just Askingwant to know: What questions do you have about cancer screening in Canada? Are the current guidelines serving you adequately? Fill in the details on this form (new window) and send us your questions before our show on April 27.

A lack of leadership on national guidelines has also led to patchy coverage across the country, he said, because some Canadians are accessing cancer screening sooner than others.

Cancer research from the 1960s is still being used

He saw Dr. Anna Wilkinson the effect of those guidelines she was taught to follow. As an Ottawa family doctor treating oncology patients, she has worked with many women in their 40s dying of breast cancer.

They asked for a mammogram and were told, ‘No, you don’t need one because you’re in your 40s,’ said Wilkinson. It’s heartbreaking.

That prompted Wilkinson to co-author a study (new window) which compared breast cancer statistics from states that screened women in their 40s with statistics from states that followed the task force’s guidelines. Her study found that earlier screening led to significantly better survival rates.

Despite new evidence from Canada and around the world about the benefits of screening younger women, Wilkinson said the task force continues to weigh outdated data in making its recommendations.

The task force is still using data from a 1963 trial to decide whether women should be screened today, he said.

That is completely irrelevant at this point, said Wilkinson. There is nothing about the way breast cancer screening was done or the way treatment was done in the 60’s that reflects today’s practice.

Other cancer guidelines out of date, experts say

The task force’s screening guidelines for several other types of cancer also lag behind what many experts, cancer organizations and other jurisdictions recommend.

They harm Canadians because they lead us to diagnose cancers later when we know survival rates are worse and treatment costs are greater, said Wilkinson.

The guidelines for cervical cancer have not been updated since 2013 and are not due to be reviewed until 2025.

The task force currently recommends against screening for HPV (new window), citing concerns the research is too premature. HPV is the virus that causes most cases of cervical cancer and can be detected much earlier than the Pap test detects changes in cervical cells.

In comparison, UK screening (new window) The advisory body began recommending HPV screening in 2016 while Australia replaced routine Pap tests (new window) with HPV screening in 2017. Many states have started screening for HPV (new window)despite the national guidelines.

Task force guidelines for lung cancer screening (new window) were last updated in 2016 and are not due to be overhauled until 2026. The taskforce provides what it calls weak recommendation to screen heavy tobacco users with low-dose CT scans, despite research (new window) who have found that CT scans help detect lung cancer early and reduce the number of deaths.

Half the time when we diagnose people with lung cancer, it’s already Stage 4, which is incurable, said Dr. Paul Wheatley-Price, who leads the lung cancer program at the Ottawa Hospital Cancer Care Centre.

He said the time it takes for the task force to update its guidelines baffling.

Prostate cancer taskforce guidelines (new window), which will not be updated until 2026, recommends against prostate-specific antigen (PSA) blood tests. The Canadian Urological Association has criticized that advice (new window) since it was published in 2014; he argues that trials show that screening reduces prostate cancer deaths by up to 44 percent.

Those guidelines (task force) are about 10 years old and we have made a great deal of progress, said Dr. Fred Saad, director of prostate cancer research at the Montreal Cancer Institute. The input that came from experts was basically ignored.

The Canadian Cancer Society also recommends (new window) that men consider getting a PSA test starting at age 50, and that Black men start testing at 45.

The task force also does not propose different guidelines for screening based on a patient’s ethnicity, despite research showing that certain populations are diagnosed with certain cancers at earlier ages. Inuit, for example, are more than twice as likely as the rest of the population to be diagnosed with lung cancer, according to the Canadian Partnership Against Cancer. (new window)

The risk of ‘overdiagnosis’

New studies are coming out all the time, said Dr. Eddy Lang, a member of the task force — but they do not always offer enough evidence for the panel to change its recommendations.

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Although the task force consults with cancer experts, said Lang, those experts are not allowed to set the guidelines—and there is a good reason for that.

Someone who has been researching and advocating in the field of breast or prostate cancer throughout their career may have a different opinion than a neutral group trying to make recommendations for GPs, he said.

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Lang said the task force needed to consider the risks associated with overdiagnosis — of subjecting patients to cancer treatments that may be more harmful than the cancer itself, or of treating cancer that would never have caused a problem in the first place. the first place.

I thought it was common knowledge, you screen for cancer, you catch it early, you nip it in the bud. But when I joined the task force and started looking at the evidence, I was really surprised by how significant the damage can be from early detection, he said.

But cancer survivor Carolyn Holland said Canadians have the right to know if they have cancer, and then make informed decisions about treatment.

What we would say to the task force is, you are not saving us from harm, she said. You are actually putting us in harm’s way by preventing us from screening, by denying us the opportunity to catch cancer early.

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