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Meet the 'previvors': Women who have an increased risk for cancer

Meet the 'previvors': Women who have an increased risk for cancer

CBC
Saturday, April 22, 2023 11:34:19 AM UTC

It was a call Anne Jisca Meyer had been dreading.

Her sister Emm had breast cancer and underwent genetic testing to determine if it was related to a hereditary mutation. 

She called Jisca Meyer to let her know that she had tested positive for PALB2, a genetic mutation that puts individuals at a higher risk for breast cancer.

"Even though that was not my result, it was hers, it was opening the door to 50 per cent chance that I have it as well. I already had five kids and I wish I'd known this before having five kids," said the stay-at-home mom from her home in Red River, Ont. 

Jisca Meyer would later test positive for PALB2, marking the beginning of her journey as a "previvor."

It's a term that is increasingly used by those with a hereditary gene mutation that increases the risk of cancer but who do not have cancer right now. Many previvors told CBC News that finding out you have an increased risk of a certain type or types of cancer can be difficult.

Lauralyn Johnston, who lives in Toronto, remembers receiving the call from the genetic counsellor. 

They confirmed she had an 87 per cent chance of breast cancer within the next five years and a 50 per cent chance of ovarian cancer over her lifetime due to her inherited variant of the BRCA1 gene mutation. 

"All of a sudden you're then in this place of 'I don't have cancer right now, but I could anytime,'" she said. 

Some opt for preventive surgery, while others may choose yearly screenings instead. 

They don't represent the majority of cancer cases; less than one in 10 cancers are caused by a gene mutation passed down in a family, according to B.C. Cancer. 

But the demand for genetic testing is high and growing. Wait times for genetic testing vary drastically among the provinces, with genetic counsellors saying some lower-risk individuals can wait up to three years or more for results.

"The reality is our public system is not able to meet the demand," said Laura Palma, a certified genetic counsellor at McGill University Health Centre (MUHC) in Montreal in an interview with White Coat, Black Art host Dr. Brian Goldman. 

Since she was a child, Jordyn Playne, 28, knew she could have a genetic mutation that puts her at a higher risk for breast and ovarian cancer.

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