Mother-of-two Ashlee Williams knew something was wrong for about two years leading up to her cervical cancer diagnosis.
- Ms Williams hopes her story will inspire Aboriginal and Torres Strait Islander women to talk about their cervixes
- New research shows Australia is on track to being one of the first places in the world to eliminate cervical cancer
- But to achieve elimination in Australia’s Indigenous population, the incidence needs to be reduced by 74 per cent
The Wadi Wadi, Wandi Wandian and Dharawal woman kept going back to her GP looking for answers, but said she kept being turned away.
“I was extremely fit and healthy, played representative sport — played local club sport, hockey, touch football and soccer,” Ms Williams explained.
“I just had this gut instinct that something wasn’t right. I wasn’t well.”
Late in 2014, Ms Williams begun feeling more lethargic and bleeding heavily, so she switched doctors and reached out to a specialist.
“I was pretty much ticking everything off the list on the Cancer Council website that relates to cervical cancer,” she said.
In 2015, at the age of 26, Ms Williams was diagnosed with stage three cancer and told she might not live to spend Christmas with her family.
She had an aggressive 5.8-centimetre tumour on her cervical walls, and the cancer had started to spread through her lymph nodes and cervix.
‘I shouldn’t be here today’
After an intensive period of chemotherapy and radiation treatment, Ms Williams — against the odds — is now in remission.
She’s sharing her story in the hope it will inspire Aboriginal and Torres Strait Islander women to talk about their cervixes.
“Talking about our cervixes and getting pap smears is an uncomfortable topic and we need to make it not uncomfortable.”
Ms Williams wants to get rid of the “shame factor” around cervical cancer.
And she’s not the only one.
Australian National University senior research fellow Lisa Whop is Australia’s leading authority on cervical cancer control in Aboriginal and Torres Strait Islander women.
Dr Whop, a Torres Strait Islander woman, was one of the lead authors on a new study in the journal Preventative Medicine that found Australia is on track to be one of the first places in the world to eliminate cervical cancer.
But First Nations women are being left behind.
Research shows ‘stark’ divide
Dr Whop and her colleagues reviewed data from four high-income colonised countries, including Australia, looking to identify how each country was performing in its cervical cancer rates.
They found cancer disproportionately affected Indigenous women, families, and communities.
Megan Smith, a senior research fellow at Cancer Council NSW who was also a lead author of the study, says the rate of cervical cancer for Aboriginal and Torres Strait Islander woman is more than twice as high as the rate for non-Indigenous women.
And the rate of deaths from cervical cancer is about four times as high.
Dr Whop described the gap as “highly unacceptable”.
“It really demonstrates the system isn’t working,” she said.
Australia as a whole is on track to eliminating cervical cancer in its general population within the next decade.
“That means a public health problem is controlled and kept at a very low level,” Dr Smith said.
“It’s not like a virus where you can eradicate it and it stops existing.”
To reach elimination, the World Health Organization has released a strategy with three targets to be met by every country by 2030.
It calls for 90 per cent of girls to be vaccinated against human papillomavirus (HPV), 70 per cent of women to be screened at least twice in their lifetime with a HPV test, and 90 per cent of women to have access to treatment.
“It is likely WHO targets will be met for Australia, but not for Indigenous women,” Dr Whop said.
“I don’t want this to be another disease where we are left behind.”
To achieve elimination in Australia’s Indigenous population, the cervical cancer incidence needs to be reduced by 74 per cent.
Dr Smith said this was “completely achievable” because Australia had the resources — including the HPV vaccine, screening options and treatments for both cancer and pre-cancer — to achieve the target.
“Aboriginal and Torres Strait Islander women experience cervical cancer at the same rates as developing regions of the world, despite having access to the vaccination programs and screening programs,” she said.
Self-collection a ‘game changer’
Dr Smith said there were a number of factors that contributed to the wide gap, including systemic racism, which deterred Aboriginal and Torres Strait Islander women from engaging with the public health system.
But there were also practical barriers, including openly talking about screening, health literacy, trusting relationships with health professionals, privacy concerns and shame.
“It’s an exam that many women find a bit embarrassing to have,” Dr Smith said.
She said issues could arise in Indigenous communities if there were only male doctors who could take a swab, and for many women living in small communities, it was “uncomfortable” to get that test from a healthcare worker who they might bump into later at the shops.
In Australia, women over 30 who are overdue for a screening can get a test from their GP or healthcare clinic that enables them to collect their own sample.
“These are just as accurate as the one the doctor collects, but it allows the woman more control,” Dr Smith said.
“In the short term, what we really need to do is better screening rates, that’s the thing that we have struggled to make available and accessible to all women.”
Dr Whop says self-collection is a “game changer” and wants them to be accessible for all women in Australia.
“I would really like to see those restrictions removed, so that all women who have the option of self-collection are able to do that,” she said.
Ms Williams, now 32, wants the same thing.
She still lives with scars of her cancer journey because the aggressive chemotherapy and radiation treatment left the young mum with issues with her organs — including bowel dysfunction, bleeding and bladder problems.
“Yes, I’m in remission, but every year since ending my treatment in 2015, I’ve been hospitalised with lots of issues,” she said.
But she’s committed to sharing her journey openly, and hopes it will spark a conversation between Aboriginal and Torres Strait Islander women and their bodies.