Breast cancer survivor Leanne Willie’s message to indigenous women

A First Nations woman and mum of four had no symptoms when she was diagnosed with breast cancer. Here’s her message to Indigenous women.

A First Nations woman and mum of four had no symptoms when she was diagnosed with breast cancer at just 42 years old.

Leanne Willie, 57, was born in Rockhampton and her mob is the Darumbal People. Her heritage Aboriginal and South Sea islander on her mum’s side.

Mrs Willie, who is now living in Brisbane and a proud grandmother of five, said she was diagnosed with Stage 2 breast cancer in September 2007 after deciding to go in for a mammogram while having other women’s health checks at the time.

“It’s never what you want to hear and it was a bit of a shock,” she said.

“You go into preparation mode.

Leanne Willie, breast cancer survivor and BreastScreen Queensland Consumer Panel. Picture: Contributed

“The hardest thing for me was telling the family.

“Males like to fix things and it’s something you can’t fix and something they don’t know about, this women’s business, especially for Indigenous people.

“There’s a lot of fear around the word ‘cancer’ in the community. You think, if I go to hospital, that’ll be the end of it.”

According to the national breast cancer foundation, breast cancer is the most commonly diagnosed cancer in Australian women, and the second highest cause of cancer death.

Women in First Nations communities are 0.9 times as likely to be diagnosed and are also 1.2 times more likely to die from the disease.

Mrs Willie had a lumpectomy, where part of her right breast was removed, in October 2007 and a second surgery three weeks later because the “cells were close to the margin”.

She then went on to have five weeks of chemotherapy followed by radiation.

She finished treatment in April 2008 and ran back on the soccer field in July.

She said she tried to keep everything as normal as possible for her kids and family throughout her treatment.

“I kept a routine just to help the children and the family get through it,” she said.

“I still worked through the treatment because I knew if I took all that time off I would just have too much time to be at home and your mind is too easy to go to the negative.

“I involved the children with everything because they had a level of understanding.

“It was our little journey that we went on.”

Although Mrs Willie is in remission, she said there was still the fear in the back of her mind when she goes to have annual mammograms.

Lorna (Leanne's mum), Leanne Willie holding her granddaughter Zamiyah and her daughter Tayjana (Zamiyah’s mum). Picture: Contributed

Mrs Willie, who is part of BreastScreen Queensland Consumer Panel, said it was very important to get checked.

“When I was growing up, a lot of the older people would say, ‘Oh, you know that cancer, it’s like rust. Once they open you up, it riddles your body, it’ll eat you up once the air hits it’,” she said.

“Because in those days we didn’t have a lot of early detection and by the time you found these things it was too late.

“Those beliefs are still instilled and ingrained with people.

“Cancer, it’s such a fearful thing and I’m not saying we should take it lightly, but we need to change that deficit and encourage early detection.

“If you can catch it early, be on top of all your health checks, this is where things can happen.

“You have more options available to you when things are found early.”

Mrs Willie’s message to Indigenous women was to stay informed.

“Ask lots of questions, educate yourself, but do that via the professionals, read brochures that you can get from hospitals or the doctors,” she said.

“Listen to other people’s stories and their experiences.

“Take somebody with you to the appointment if you can so you feel more comfortable and have a notebook.

“I always took a notebook with me to write down the questions that I wanted to ask as I went to each appointment.

“Write down the information or ask them to write it down or print it out for you so you can wrap your head around it later on.

“It’s all about education and finding things early.

“It’s easy to say, don’t be scared. We’re all scared and that’s okay. That’s a natural emotion.”

Better programs needed to support indigenous women

Doctor Christopher Pyke, a leading Australian breast surgeon at the Mater in Brisbane, has spent more than 30 years working in women’s health and has conducted research to improve breast health services to reach women in marginalised communities.

Dr Pyke said among the most marginalised groups in Australia was Indigenous women.

“Despite increased awareness and education in health, Indigenous women still feel barriers to joining the national breast screening program,” he said.

“Although there is some breast cancer awareness in the stories of the Indigenous communities we have worked with, there is this belief that unfortunately, if you go off to the hospital with cancer, you may not return.

“To some communities, breast cancer is referred to as a ‘don’t-come-home disease’. So there is a major fear associated with finding out if you have cancer, resulting in further hesitancy of early screening.”

Dr Pyke hoped to see “co-design” with local communities as a way to develop better programs to support Indigenous women.

Chief executive officer of Jean Hailes for Women’s Health, Doctor Sarah White, said there was an enormous need for culturally safe and language-appropriate health education that empowered and informed indigenous women so they could look after themselves.

“Building knowledge and trust is a critical first step in encouraging women to have a breast screen,” Dr White said.

Diagnostic technology is continuously evolving to support earlier diagnosis and arm healthcare professionals with the necessary tools and systems to reach women in rural and remote communities.

Business Unit director of Breast and Skeletal Health at Hologic, George Boukouvalas, said they ran education programs for radiologists in both metropolitan and rural areas of Australia to ensure a gold standard of breast screening and diagnosis is upheld no matter where you are.

“We have also partnered with various BreastScreen programs to support mobile breast screening vans that travel to hard-to-reach areas, which is critical to making healthcare equality a reality,” Mr Boukouvalas said.

The Breast Australia program invites women aged 50−74 to have a free mammogram every two years.