One hospital's push to bring genetic cancer testing to more Black women

Breast cancer tends to hit Black women at younger ages and be more aggressive, but they're underrepresented when it comes to genetic screening, say doctors launching a new awareness campaign.

Theawareness campaign,announced Wednesday by Women's College Hospital in Toronto, focuses on genetic screening for changesor mutationsin two key genes, BRCA1 and BRCA2, as well as others.

Dr. Aisha Lofters, a family physician and researcher at the hospital,helped starttheTake Action, Take Control initiative that is designed to empower Black women tolearnmore aboutgenetic cancer testing.

Screening aims to catch a disease like breast cancer before it causes any problems that the patientnotices, Lofters said.

WATCH | Program offers genetic cancer testing to Black women:

Push to get more Black women genetic screening for cancer

6 months ago

Duration 2:14

Genetic cancer screening is on the rise in Canada, but the participation of Black women remains low despite the increased risk of breast cancer. A Toronto hospital wants to empower them to get genetic testing and potentially catch cancer earlier.

"The idea of that is that by catching it very early, you're able to change the path of that disease, so you're actually able to literally save lives," she said in an interview.

When the BRCA1 or BRCA2 genes aren't working properly due to mutations, they are strongly associated with breast, ovarianand prostate cancers.According to Women's College Hospital,it's estimated one in every 300 to 400 Canadians carries a BRCA1/2 gene mutation, which is about the same in the U.K. and more common in the U.S.

The hospital and Canadian Cancer Society estimate BRCA mutations predispose people to a higher lifetime risk of cancers compared with the average lifetime risk in the general population:

• Breast cancer 70 per cent vs. 13 per cent.
• Ovarian cancer 20to40 per cent vs. 1.4 per cent.
• Prostate cancer 35 per cent vs. 12.3 per cent.

Researchers at Women's College Hospitalsay Black people are vastly underrepresented in its Screen Project program, making up 1.5 per cent of participants since it launched in 2017.Black individuals make up 9.6 per cent of Toronto's overall population.

"We see these genes occurring in all ethnic and racial communities, but what we do realize is that the knowledge about these genes is lower than it should be in the Black community," said Lofters.

The screening is done through blood tests, cheek swabs or saliva samples. The Screen Project is promoting saliva based self-test kits for a fee and results take up to eightweeks.

BRCA status leads woman to opt for mastectomy

Provincial programs cover the testing and genetic counselling depending on immediate family history or if an individual has cancer. Other people with a less direct connection to cancer can choose to pay several hundreds of dollars out of pocket for direct-to-consumer testing, which provide results alone and may not include genetic counselling.

Elysia Bryan of Toronto was offered free genetic provincial screening after she noticed a lump growing on her right breast in 2021 when she was 34.

"My first thought was 'I'm going to die,' " Bryan recalled. "My mind went to the darkest possible option, and I know now that the doctor was telling me at the time it was treatable."

Bryan,who had a lumpectomy and eight rounds of chemotherapy, has a family history of breast cancer, which she wasn't aware of at the time of her diagnosis. She says that's what "opened up that conversation," with her family.

After shelearned she hasthe BRCA2 mutation, Bryandecided to have a double mastectomy with reconstruction as well as a month of radiation to prevent a recurrence of cancer.

Bryan says it was important for her to have the testing and to know the information it provided so she could make plans for her family and career. She also shared her diagnosis with relatives so they know they could also be at risk.

Encouraging accessibility and awareness

Other options for people with BRCA1 or 2 mutations include taking medications, depending on the type of cancer, and more breast exams.

Bryan had provincially funded genetic screening at another hospital, but she wanted to share her story as part of the campaign at Women's College.

"When I was searching for information, there wasn't a lot of stories of people who looked like me or who were in my age range," she said.

Dr. Onye Nnorom, an assistant professor at the Dalla Lana School of Public Health and a family doctor, is not involved in the Women's College project, but herwork focuses on anti-Black racism as a driver of inequities in Canada.

Among "Black women, particularly women of West African descent and Central African descent there is a risk of more aggressive breast cancer that presents at younger ages," Nnorom said, noting it tends to be harder to treat.

Knowing genetic screening is available is key, Nnorom said. "What we're hearing in community is that a lot of women do not know about this."

Lofters suggests people talk to their family openly about cancer and if there is a history of it.

"I think for many people and many communities, we don't talk sometimes about why aunty so and so died and why grandma died," shesaid. "It is so important to know what you might be at high risk for."

Lofters and Nnorom also want physicians to have conversations with their patients.

"We really need to make sure that our health-care providers are aware of this issue that we're seeing internationally with Black women having poorer outcomes when it comes to survival," Nnorom said.