'I'd be dead by now': Canadians share breast cancer stories as new screening guidelines spark controversy

Although a federal task force says mammograms shouldn't be routine for women under 50, new data reveals a significant spike in cases for women in their 20s, 30s and 40s.

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Robyn Goldman of Ajax, Ont., who was diagnosed with breast cancer at age 33, stands in front of a shore. (Photo provided by Robyn Goldman)
Robyn Goldman is from Ajax, Ont., and was 33 years old when she was diagnosed with breast cancer. Rates among women in their 20s, 30s and 40s are rising in Canada. (Photo provided by Robyn Goldman)

A few years ago, when Robyn Goldman was 33, she noticed an odd lump on her left breast she hadn’t had before. Sometimes, she could even see it distort the shirt she was wearing. There was no pain or discharge that might indicate a condition like breast cancer, but still, she was worried. “Something in my gut told me this is something serious,” said Goldman.

Finding medical validation was a hurdle. She saw her doctor several times, who told her she was young and had nothing to worry about; women her age typically had dense breasts and a mammogram would just expose her to unnecessary radiation.

Following different advice from someone at a women’s hospital in Toronto, Goldman went to the ER because she knew they couldn’t turn her away. An ultrasound and eventual biopsy confirmed what Goldman had feared: She had triple-negative breast cancer. “So if I would have waited until that recommended age of 50 for a mammogram, I would be dead by now,” she noted.

Goldman’s experience parallels many experiences of Canadians whose medical concerns and symptoms are dismissed because of their age. The move to have routine breast cancer screening for women under 50 faced another potential road block last month when the Canadian Task Force on Preventive Health Care released an updated draft of their breast cancer screening guidelines. The task force's stance that women ages 40-49 of "average risk" should not be routinely offered mammograms raised eyebrows with advocacy groups and is in opposition to newly released data.

Robyn Goldman poses inside a hospital. (Image provided by Robyn Goldman)
Goldman's breast cancer treatment included eight rounds of chemotherapy and a lumpectomy. (Photo provided by Robyn Goldman)

According to research by the University of Ottawa, breast cancer rates are rising among women in their 20s, 30s and 40s. The study, published in the Canadian Association of Radiologists Journal in late April, reviewed breast cancer cases over 35 years to shed light on trends in breast cancer detection in Canada. The school’s press release noted researchers highlight the need for an immediate shift in public health policy as early detection is key to reducing breast cancer death and complications.

Moreover, the Canadian Cancer Society (CCS) is now urging all provinces and territories to begin screening for breast cancer at age 40 for people at average risk of the disease. In a May 9 statement, the organization noted it’s changing its position due to evolving evidence and the number of younger people frustrated they’re left out of the Canadian Task Force on Preventive Health Care’s guidelines to begin screenings at age 50.

“Over the last several years, there has been a groundswell of support for screening to begin at a younger age and for a more inclusive system — one that empowers people between the ages of 40 and 49, no matter where they live, to access screening without barriers,” Dr. Sandra Krueckl, executive vice president of mission, information and support services at CCS, said in the press release.

“Lowering the starting age is an important step, allowing more breast cancers to be found earlier when treatment is likely to be more successful.”

Yahoo Canada recently spoke to Dr. Jean Seely, who led the study and is The Ottawa Hospital's head of breast imaging, as well as breast cancer patients who were diagnosed at an early age.

Robyn Goldman, who advocated for her own health while showing symptoms and was diagnosed with breast cancer, lies in a bed. (Photo provided by Robyn Goldman)
Goldman had to advocate for herself to be screened for breast cancer, despite showing symptoms. She went to the emergency room because she knew she couldn't be turned her away. Shortly after, she was diagnosed with triple-negative breast cancer. (Photo provided by Robyn Goldman)

According to Health Canada, breast cancer is the second most common cancer in Canada. One in eight women will be diagnosed with breast cancer in their lifetime. Some provinces, like British Columbia, New Brunswick and soon Ontario (starting in the fall), offer mammograms to those aged 40 and above through self-referrals, but other parts of Canada only provide them to people aged 50 and older. Seely, who is also a professor in the University of Ottawa's department of radiology, said almost 17 per cent of women in Canada are diagnosed when women are in their 40s.

“And we are seeing that the penalty they pay for not being diagnosed early is they are much more likely to have a more advanced stage of diagnosis and need more invasive treatments,” she added. “And also pay the price of their lives.” She noted not screening women earlier in their 40s will cost around 400 Canadian lives each year. She shared she hopes women can be screened even before that age.

The University of Ottawa research found the following:

  • Women in their 20s: There were 3.9 cases per 100,000 people between 1984 and 1988. That's compared to 5.7 cases per 100,000 between 2015 and 2019 for a 45.5 per cent increase.

  • Women in their 30s: There were 37.7 cases per 100,000 people between 1984 and 1988. This is compared to 42.4 cases per 100,000 between 2015 and 2019 for a 12.5 per cent increase.

  • Women in their 40s: There were 127.8 cases per 100,000 people between 1984 and 1988. That's compared to 139.4 cases per 100,000 between 2015 and 2019 for a 9.1 per cent increase.

Robyn Goldman sits on a bed while wearing a blue hospital gown. (Photo provided by Robyn Goldman)
Goldman's doctor told her numerous times she was too young to have breast cancer and that she shouldn't be too concerned. Goldman said if she waited for the national recommended age for a mammogram, which is age 50, she "would be dead by now." (Photo provided by Robyn Goldman)

Seely said there needs to be more research as to what's causing an increase in breast cancer rates among younger women. However, the findings certainly correlated with what she and her colleagues have been seeing in their practices.

She recommended doing a risk assessment test for women younger than 40, which can determine their lifetime risk of breast cancer, especially for those who have a family history. She added having more than one first-degree relative, or more than two second-degree relatives who have had it, puts women into a higher risk category.

Although breast cancer rates for women under 50 are on the rise, the Canadian Task Force on Preventive Health Care says women of average risk shouldn't be "systematically" screened for breast cancer in their 40s.

Last month, the federally-created task force released a draft version of their updated breast cancer screening guidelines specifically for women of average or "moderately increased risk" of developing the disease. The guidelines state that women aged 40-49 who have been informed of the "benefits and harms" of screening and want to proceed should be offered a mammogram every 2-3 years.

The task force considers screening at all ages a "personal choice" and says that anyone over 40 who wants a mammogram should have one — but believes that the "harms may outweigh the benefits" for women in their 40s. According to the CBC, the task force considers the harms to be "unnecessary tests and anxiety."

Advocacy groups are
Advocacy groups are "deeply concerned" by new cancer screening guidelines for women under 50. (Image via Getty Images)

The task force's stance on screening for women under 50 was a disappointment to Breast Cancer Canada, an advocacy group focused on research for the disease. Breast Cancer Canada said it was "deeply concerned" by the task force's guidelines and urged them to reconsider their stance. In an online press release, the group said the latest guidelines "contradict clear evidence and emerging trends that underscore the critical importance of early detection" and ignores the calls from Canadians to lower screening age. A September 2023 poll by Breast Cancer Canada found that 89 per cent of Canadians believe the breast cancer screening age should be lower than 50.

"The task force’s decision to not advise routine screenings for women in their 40s fails to acknowledge the advancements in screening and detection and what research is showing us including the increase in early-age breast cancer over the past 20 years,” Kimberly Carson, CEO of Breast Cancer Canada, said in a press release. “Early detection saves lives. The benefits of early detection and the opportunity to treat cancer before it advances, spreads, and becomes more complicated significantly outweigh the harms of mammograms as cited.”

Robby Spring was 35 years old when she asked her doctor for a mammogram and ultrasound because of her strong family history of breast cancer — both her mom and older sister had been diagnosed with the disease. A biopsy confirmed Spring also had cancer.

“Going through it as a family was also stressful,” said Spring. “It was shocking. I was scared. There are fertility implications with having breast cancer and I don’t have kids, but I want to have kids.”

Spring finished chemotherapy in December 2023. While her energy is returning, she's still trying to find her footing. She was put into chemical menopause and will soon start taking medication. She also faces longer-term side effects, having gone through chemotherapy, and she will also be going to adjunct therapy. “As someone who is supposed to be in the prime of their career, those are really hard things to have on your plate,” Spring shared.

Robby Springs poses with her sister (left) and mother (centre). (Image taken by Natalia Dolan)
Robby Spring (right), her sister (left) and mother were all diagnosed with breast cancer. Spring advocated for early screening at the age of 35 because of her family's medical history. (Image taken by Natalia Dolan)

Although part of her life was put on hold, Spring has put more time into advocacy work through the Canadian Cancer Society. She shared her story of her family and continues advocating for changes, such as earlier screening in women, along with better follow-ups and screenings after treatment.

Seely encouraged women who have noticed any changes in their breasts — whether it be a new area of thickening or lumps — pursue diagnostic testing. Additionally, she said if there are any changes in the nipple or nipple discharge, specifically if it’s watery or bloody, then that might be a sign of cancer. Lastly, if there is a lump in the armpit, that could indicate that cancer has spread to the armpit. “Those are all warning signs of breast cancer,” she said. “And if we identify breast cancer early, the chances of survival are really good.”

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