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In 1993, Lyn Swinburne noticed something odd in one of her breasts. “I found a strange thing, not a pea, not a thing that you think you’re looking for, but a texture that was different,” Lyn says.

She was told – over the phone – that she had breast cancer. This wasn’t considered wrong at the time, it was just how it was done.

Insensitivities like this happened throughout Lyn’s treatment, and she knew something had to change. “I was outraged that we were managing women so poorly,” Lyn says.

“There’s no point surviving it if you come out a completely destroyed person, and that’s how it felt for me. It felt like I had no power in this at all.”

In 1998 she started Breast Cancer Network Australia. She travelled throughout Australia to speak to women and hear their stories. And she wrote

The Beacon magazine from her kitchen table – enlisting her young children as envelope stuffers.

“The magazine was really meant to be a forum for women,” Lyn says.

“It started with my own unhappiness about the system, but then I heard the most shocking stories, shocking. And you just can’t sit by and listen to that, you can’t.”

Women wanted to know everything from what to wear to surgery to how to tell their children they had cancer. Members of BCNA eventually became advisers to researchers and sat on medical boards.

“It just needed that woman’s voice sitting there at the table, reminding them that this is a disease about women, not an academic, scientific interest piece – this is about real people,” Lyn says.

BCNA now has more than 110,000 members.

Lyn stepped down as chief executive five years ago, and is now chair of the Royal Women’s Hospital.

“I’m still very passionate, I still speak very regularly to newly diagnosed women who contact me and that’s a great privilege,” she says.

“Women have a real passion for making things better for the women who come after us.”