When Rachel visited her doctor complaining of a backache, the last thing she expected was that it would turn out to be a life-threatening disease.
"And the first time I got diagnosed was with stage 2B cervical cancer."
That was in early 2020.
She underwent radiotherapy, chemotherapy and brachytherapy, which worked initially, for about six months.
"Then it came back, which was then stage 4b, and it had metastasised into my lymph nodes," Rachel said.
Rachel, which is not her real name, has undergone further months of aggressive treatments since then and now it's just a waiting game to see if they've worked.
But the 44-year-old from Victoria said she was shocked by how fast the cancer developed, given she'd always had regular pap smear tests.
She realises that regular screening is just one part of prevention. The other is a vaccine.
"In my generation we didn't get the vaccine that young girls get now," Rachel said.
"They're trying to rule out cervical cancer through that and they will eliminate it."
Health experts predict that Australia will be the first country to eliminate cervical cancer by 2035, something achieved through a combination of cervical cancer screening tests (which have replaced Pap smear tests) and immunisation programs.
"We've reduced the incidence of cervical cancer, or at least halved the rates of cervical cancer," Vicky Darling, the CEO of the Australian Cervical Cancer Foundation (ACCF), said.
The vaccine for the human papillomavirus or HPV, a sexually transmitted disease which causes 90 per cent of all cervical cancers, only started in Australia in 2007.
That meant generations of women had missed out, Ms Darling said.
"The highest incidence of cervical cancer in Australia is found in that 30 to 44 year-old age group," she said.
"From 30 years on, most women of that age have not been vaccinated for HPV."
She said this age group was also distracted by other responsibilities such as children, careers and ageing parents.
Rachel said while it was great Australia was on track to wipe out cervical cancer, she was worried about the impact it would have on those who already had the disease.
"The problem is they're not spending money on research or anything now because they know they're going to eliminate it," she said.
"So all us that are suffering are going to struggle to get any trials or funding for cervical cancer."
In a statement, Ms Darling said eliminating cervical cancer would require a concerted effort.
"When cervical cancer is eliminated, ACCF wants to ensure it stays that way," she said.
"Sustained effective preventative measures will be needed for which we will continue to advocate."
Women from marginalised communities might be left behind
A 2022 study by the Journal of Migration and Health found that migrant women from South Asian or Middle Eastern countries got fewer screenings and were less aware of what caused the disease.
And according to the National Cervical Screening program, the cervical cancer death rate among Aboriginal and Torres Strait Islander women was more than three times higher than non-Indigenous women.
Vicky Darling said that was why Australia now needed to focus on educating and helping women from these backgrounds access preventative measures such as cervical cancer screening tests and the HPV vaccine.
"For people from culturally diverse backgrounds, there's not enough information in their language, there are also cultural barriers for women to access their own health care," she said.
"And in regards to prevention, there's not always a culture of talking about your sexual and reproductive health."
Anahita Tonkin, the CEO of the Yalu Aboriginal Corporation, based in the remote Northern Territory Aboriginal community of Galiwinku, pointed out women's health was often low on the priority list in these communities.
"There is access [to health care], however due to the population and cases of various chronic illnesses, going to the clinic is challenging at times," she said.
She points out other barriers in these communities, such as the doctors are fly-in-fly-out so women don't have a regular GP and that also means there are language barriers. On top of that, there's a general fear and distrust of clinicians.
But she thinks what could help is the recently launched self-collection kit for cervical cancer screening.
What is the self collection kit?
The self-collection kit was launched mid-2022 and it allows women to take their own vaginal sample either at a clinic or possibly at home.
"I think it's a step in the right direction," Ms Tonkin said.
"For a lot of women, it will be imperative for them to be able to get a kit and in … privacy, where possible, do the self-collection."
She added that could take away feelings of shame or embarrassment, particularly if some women were able to do the self-collection in their own homes.
"But privacy is an issue as well, accessibility to privacy is an issue," Ms Tonkin explained, since some women could be sharing a three-bedroom home with up to 19 people.
Lara Roeske was involved in launching the self-collection kit last year. She said since then, there had been a huge uptake in the rate of people using the kits.
She found that in December last year the kit comprised one 12th of all cervical-cancer screenings.
"It's promising but we still have a way to go," Dr Roeske said.
That's why she has been pushing for a better education campaign about the kit, particularly because she believes it will really help women from remote or marginalised communities overcome barriers to cervical-cancer prevention measures.
"There's fear and embarrassment" Dr Roeske said, as well as a need for "culturally safe approaches or even having access to a female practitioner".
"Noting there is now some dignity and control around taking the test, there is also the element of privacy … and essentially it should be a painless test."
