WHEN SHERRY WILCOX turned 40 in 2018, she asked her family doctor for a mammogram. A busy Toronto lawyer with three young daughters, she wanted to stay on top of her health. But her doctor told her that breast screening in Ontario started at 50, as dense breast tissue in younger women can prevent clear results.
So Wilcox decided to wait. But in 2022, after finding a small lump in her right breast—which her doctor concluded was likely benign—she asked again. Once more, at age 44, she was refused a mammogram and was offered an ultrasound instead. When it showed something suspicious, a second follow-up ultrasound was scheduled—for 16 weeks later.
“At that point, I said, ‘I really want a mammogram. And if you’re not willing to give me that requisition, I’ll go elsewhere,’” Wilcox says. Her doctor consented; when the results came back, Wilcox’s worst fears were proven true. She had an aggressive form of breast cancer: triple-positive invasive carcinoma. It had already spread to her lymph nodes.
“I am frustrated…at how it could have been different. I know that it could have been caught earlier, and that could have changed things,” Wilcox says. “I might not have needed chemotherapy, radiation or a bilateral mastectomy. But I can’t go back and change that now.”
More Canadian women, like Wilcox, are getting breast cancer at younger ages. That’s why, in May, Wilcox shared her story with Ontario politicians to advocate for a lower screening age. Five months later, Ontario announced it would lower its eligibility age for publicly funded breast cancer screenings to 40. This change will come into effect next fall. But in four provinces— Quebec, Saskatchewan, Manitoba and Newfoundland and Labrador—people still aren’t able to self-refer for a mammogram until the age of 50. When they ask for a requisition, they’re often refused. Meanwhile, Prince Edward Island allows self-referral starting at age 40 and Alberta requires a doctor’s referral to start screening at the same age.
For women at low or average risk under 50, the Canadian Task Force on Preventive Health Care had previously recommended “not screening with mammography,” but follows that “the decision to undergo screening is conditional on the relative value a woman places on possible benefits and harms from screening.” The harms listed include “overdiagnosis resulting in unnecessary treatment of cancer that would not have caused harm in a woman’s lifetime” and “physical and psychological consequences of false positives.” False positives, or abnormal recalls, are fairly common in younger people and can cause anxiety until a further investigation is done, according to the Task Force. As of October 31, the Task Force announced it is “conducting a comprehensive evidence-based review process to update its breast cancer screening guidelines,” in response to the lowering of the age of self-referrals in Ontario.
The wording in the guidelines—in particular, the decision to screen being “conditional” on personal values—is intended to help younger people make an informed choice. But in reality, many family physicians may interpret them incorrectly to mean that they can refuse mammogram requests they believe are unnecessary, says Dr. Jean Seely, head of breast imaging at The Ottawa Hospital. In addition, she says many dismiss younger women’s concerns because they wrongly underestimate the likelihood of breast cancer developing in people under the age of 50. Other women don’t have a family doctor to provide them with a referral, so they’re only able to get a mammogram in the ER after discovering a lump. “These three reasons are why we have this big problem of more advanced breast cancers in women in their 40s,” Seely says.
All this could change later this month, however, when a draft of updated breast cancer screening recommendations in Canada is due. In 2022, a study conducted by researchers at Brigham and Women’s Hospital revealed that 14 early-onset cancers—including colorectal, head and neck, stomach and breast—have been growing at higher rates in many countries, including Canada and the U.S. Based on new research, the U.S. lowered its recommended breast screening age by 10 years, to 40, in May. Shortly after, Canada’s federal government gave the Canadian Task Force on Preventive Health Care an additional $500,000 in funding to urgently review and update its own guidelines; it has until next spring to review those guidelines.
FROM 1984 TO 2019, there has been an eight percent increase in women being diagnosed with breast cancer in their 40s, with one in six Canadian women diagnosed in that age group, according to new research by Seely and Statistics Canada that is awaiting publication. But the most marked increase has been in the 30 to 39 age group, which has seen a relative increase of 18 percent in the same time period.
There isn’t enough data yet to explain the rise of early-onset cancers, but researchers and medical experts believe that increasingly unhealthy diets, sedentary lifestyles and obesity could play a big role. Alcohol is another culprit, especially when it comes to breast cancer. “Women are drinking more, and there’s more binge drinking. We’re particularly seeing this in young women, such as teenagers and women in their 20s,” says Dr. Ellen Warner, a breast cancer oncologist at Toronto’s Sunnybrook Hospital, a professor of medicine and the founder of PYNK, a breast cancer support program for young women.
Warner says she knew years ago that early-onset breast cancer would become more common based on trends she was seeing. Those trends include more girls getting their first periods at an earlier age; more women giving birth for the first time in their 30s rather than their 20s; and a greater level of alcohol consumption from a younger age.All of these factors are linked to higher levels of estrogen and progesterone circulating in the body, which increases the risk—about 70 percent of premenopausal women’s breast cancers are hormone-sensitive. An increased use of birth control pills by younger teens and diet could be worsening the problem, Warner adds. There is also some research suggesting that exposure to endocrine disruptors—chemicals such as bisphenol A (BPA) and phthalates that mimic estrogen in the human body and are found in everyday products such as plastic bottles and shampoos—could also be linked to different cancers, including breast cancer.
She says more research around risk factors and prevention strategies are needed, but increasingly research is being funded by pharmaceutical companies rather than the government.
BEING DIAGNOSED WITH breast cancer is life-changing and devastating at any age. But younger women are more likely to go through aggressive, extensive treatment, as breast cancer can grow faster in younger bodies and is often caught at advanced stages. As a result, it is less likely to respond to breast cancer treatment, and there are higher chances of it metastasizing or recurring.
That’s what happened to Wilcox. She’s going through a second round of chemotherapy after the first one failed to eliminate all the cancer cells from her breast tissue, putting her at a higher risk for recurrence. “It’s been hell for my family. My first round of chemo was horrendous. I was so sick I could barely eat or drink or stand up for a week after the treatments,” says Wilcox. Her mastectomy similarly left her in pain and bedridden. “It was really, really hard for my kids to see me the way that they did,” she says.
To prevent recurrence, doctors typically prescribe premenopausal women with hormone-sensitive breast cancers an estrogen-blocking pill such as Tamoxifen, which—along with the side effects of chemotherapy—can push them into menopause prematurely. That makes it not only much more challenging for them to get pregnant, but can also lead to hot flashes, mood swings and a loss of libido.
Early-onset cancer can also be a lonelier experience, as often patients are the only ones among their friends going through it, and cancer support groups tend to be full of senior women. That’s why—along with family therapy and financial support—younger patients need more psychosocial help, says Warner.
Louise Wang experienced that feeling of isolation firsthand. In February 2022, the then 39-year-old from Halifax discovered a 3-cm lump in her right breast. She went to her family doctor, who said it might be nothing but referred her for a mammogram anyway to be sure. Trying not to worry, Wang continued with her life. She was running an immigration business, aiming to apply to law school and planning to travel to China to see her parents after three years apart. After a string of heartbreaks, she had also decided to date again.
Getting a mammogram took time. Wang had to reschedule one appointment herself because of a conflict with school; another was rebooked by medical staff after a COVID-related hospital shutdown. She was finally diagnosed in May 2022, three months after she had first seen her doctor about the lump. When she received a Stage 2 breast cancer diagnosis, her dreams were shattered. She learned she would have to undergo a mastectomy, aggressive chemotherapy and radiation treatment—alone.
“I felt like there was no hope, and I would rather die than continue this journey,” Wang says. “It was just me in my apartment staring at my four walls, which I had already been facing for two years because of COVID.”
Wang says she was lucky a former co-worker became her “second mom” and took her to chemotherapy appointments. But she was disappointed that several of her Asian friends disappeared from her life, which she says was due to the cultural stigma of cancer.
Her mother also worried she would never get married and advised Wang to keep the illness a secret. But Wang wants to fight the stigma so other racialized women feel confident to share their stories and get support. It’s perhaps even more crucial for them: U.S. studies show that of the racialized women who get diagnosed with invasive breast cancer—which make up 80 percent of breast cancer diagnoses—around 26 percent are diagnosed before the age of 50. For white women that number is closer to 15 percent. Racialized women are more likely to die from it compared to white women in the U.S. While the reasons differ across ethnicities, factors such as genetic predisposition, obesity, poverty and racial discrimination in the healthcare system have played a role in health outcomes for minority women.
While cancer forced Wang to sell her business and freeze her eggs, more recently she’s been travelling America, completed the LSAT and is applying to law school. But there are still daily reminders of her experience: she’s on Tamoxifen; she wears bifocals due to weakened eyesight from chemotherapy; and her right breast was removed. She wants to get it reconstructed, but she’s heard others have waited up to five years for the surgery in Halifax.
Long waits are common throughout the breast cancer journey, which worsens outcomes for patients and survivors. Canada’s healthcare system has struggled for years with delays in cancer surgeries, diagnostic testing and screenings—even more so after the backlogs created by the pandemic and the severe staff shortages that followed.
Due to decades of underfunding, Canada also lags behind most other OECD countries when it comes to accessing CT and MRI scanners, radiotherapy machines, hospital beds and medical specialists. All of this only adds to the problem.
WITHOUT ENOUGH RESEARCH on women’s awareness of breast cancer risks and screening policies, it’s challenging to create effective prevention policies. But there are actions that all levels of government, policy makers and communities can take in the meantime, says Elizabeth Holmes, director of health policy at the Canadian Cancer Society.
“There are so many factors that prevent people from eating well, or being active or have an influence on their body weight,” she says. “We would really like to see an increase in the implementation of healthy public policies and programs that will improve cancer prevention.”
That includes, for example, mandatory warning labels on alcohol products, increasing tobacco taxes, reducing food insecurity, adding a levy on sugary drinks, and improving the infrastructure for active modes of transportation, like cycling and walking.
While these public policy measures are a primary form of prevention as they prevent the disease from occurring in the first place, secondary forms of prevention—such as screenings—are also important, says Holmes. At the individual level, she says people should learn about inherited risk factors—such as gene mutations and dense breast tissue—to determine if they should apply for early screenings based on high risk.
The Canadian Task Force on Preventive Care, however, doesn’t currently consider screening a prevention tool because it changes the outcome rather than preventing the disease. And while co-chair Guylène Thériault acknowledges earlier screenings can prevent death, she points out that their research shows the difference in actual number of lives saved is not significant when balanced with the relative risks (one life saved per approximately 1,700 screenings for women aged 40 to 49, compared to one life saved per roughly 1,300 screenings for women between ages 50 to 59).
A systematic review of patient values and preferences in Canada carried out in 2017 also showed most women aged 40 to 49 years choose not to be screened after being informed of the harms of early screening, she adds. False positives are estimated to make up around 300 out of 1,000 screenings, while overdiagnoses—detecting cancers that are so slow-growing that they will never progress to the point of causing harm or death—account for about three cases out of 1,000.
But some believe the risks of false positives and overdiagnoses are overblown and can be mitigated by informing patients beforehand. “If you talk to any patient who has a delayed diagnosis, they will tell you that they would much rather deal with the anxiety of a false positive or an abnormal recall than the anxiety of dealing with advanced breast cancer and all the complications,” Seely says. She adds that overdiagnosis is less likely among younger women because their tumors typically grow faster.
In addition to improving outcomes for women, early diagnoses stand to benefit the healthcare system. The cost to treat an early stage cancer patient is roughly $20,000 to $30,000, versus an advanced stage patient who would cost the health care system approximately $400,000 to $550,000, Seely says. Meanwhile, it takes about 15 minutes for a radiologist to conduct a mammogram for about $70, according to Seely.
“Treating advanced stage cancers is a tremendous cost to our health care system,” Seely says. “But if you save even a few people with stage four breast cancers, you’re going to recoup those costs quite quickly.”
FOR WILCOX, IT’S been a long road to recovery, and the journey isn’t over yet. She finishes her second round of chemotherapy this month, but will continue with hormone therapy and has more surgeries ahead of her. She is worried about dying young, and struggles with the physical changes, such as the loss of her hair and breasts, and weight gain—all of which have made her at times unrecognizable to others.
But Wilcox says she’s trying her best to put on a brave face for her children and set an example through her advocacy work. “It’s not just to show them you’re strong, but also to help others. I really don’t want to see other families and women go through what we’ve gone through during the last year.”
Update: This story has been corrected to clarify that Louise Wang was diagnosed with, not simply screened for, breast cancer in May 2022. This story has also been updated to include a new deadline for the Canadian Task Force on Preventative Care to review its breast cancer screening guidelines.