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What it’s like living with the BRCA gene mutation: ‘It’s just so hard’

What it’s like living with the BRCA gene mutation: ‘It’s just so hard’
Canada
Since ovarian cancer is harder to diagnose, and many are late-stage diagnosis, doctors recommend women who have already had children to get an oophorectomy — where they remove the ovaries and Fallopian tubes, but not the uterus.

That comes with its own set of side-effects, including induced menopause, and along with it symptoms like hot flashes, a decreased sex drive, vaginal dryness and mood swings. While there are hormone replacement medications, the symptoms can persist.

That was a concern for Lauralyn Johnston of Toronto — who found out she had an aggressive version of the BRCA1 gene in 2017. While she didn’t have cancer, she got tested because a family member tested positive for the gene mutation.

But since her family has a history of dementia after menopause, inducing that was something she didn’t want to start early.

“I’m not just one gene,” she said. “Explaining to my medical professional that I’m not just my (gene mutation) was kind of a recurring theme.”

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She did her own research and decided to get a salpingectomy, removing the Fallopian tubes and leaving the ovaries.

Lauralyn Johnston, who has the BRCA1 gene mutation, and her daugher Eria Byrne.

Handout. Artwork by Laura Whelan

“At the moment, this is not a standard,” said Dr. Christine Elser, a medical oncologist at Toronto’s Princess Margaret Cancer Centre.

“We don’t know if it is as effective as removing the ovaries as well. But that is a procedure that once we learn more about, may have a role in a better quality of life.”

Johnston said she wanted to balance her quality of life with her life expectancy — and has come to terms with the fact that her lifespan may not be as long as 84 years old, the average age of a Canadian woman according to Statistics Canada.

So while there may still be a risk of ovarian cancer because she still has her ovaries, she believes her life will be better because of it.

For Maja Adolfo-Piwek of Toronto, who was diagnosed with breast cancer at 39, the side effects of her two mastectomies and oophorectomy are constant.

“You can go back to your life, but you can never really go back to your life,” Adolfo-Piwek said.

Her side effects include hair loss, hot flashes, and vaginal dryness, which she says is “quite painful.”

“They told me about the hot flashes, but they never told me about all the other stuff.”

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“I think is there is a gap in the system, in the medical system where the oncologists, all they want you to do is just remove (your ovaries and breast) because they want to save your life. But they do not prepare you for what’s to come after that.
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