Vanja knew nothing about the lethal disease growing inside her. Countless Aussie women are in the same boat

Vanja Wilson knew nothing about ovarian cancer before she was diagnosed at just 38.

Now she has to pay almost $7000 a month for medication that could stop the lethal disease from coming back and ripping her away from her two young daughters.

But she might have avoided this fate if Australia had a better understanding and awareness of ovarian cancer, which is the most lethal gynaecological cancer.

"If I had felt a lump in my breast, I would have immediately put two and two together and taken it seriously because breast cancer awareness is so high," Wilson told nine.com.au.

"But the awareness for ovarian cancer – for me, it was non existent."

Nearly 2000 women are diagnosed with ovarian cancer every year in Australia, but fewer than half survive more than five years.

The survival rate is even lower for the 70 per cent of women diagnosed in the advanced stages.

Diagnoses are on the rise in Australia, yet millions of women and girls have little to no understanding of the disease, its symptoms, or how quickly it kills.

Wilson only experienced two symptoms, neither of which seemed serious on their own.

First was a lump on her stomach in 2023, which two male GPs dismissed as a torn muscle or scar tissue.

One advised she get a $700 MRI if she was really worried, but Wilson didn't have the cash.

"I just put it in the 'nothing to worry about' pile," she told nine.com.au.

"I'd done my due diligence ... and they didn't seem to think it was needed, so I left it."

A few months later, she noticed blood in her stool.

The lump was still there and she has a family history of bowel disease, so she booked in for what should have been a routine colonoscopy.

When she woke up, there was a piece of paper by her hospital bed covered in doctors' notes.

It had been left there by mistake but curiosity got the better of her, so she read it.

"I saw words like 'procedure interrupted', 'large stricture found in bowel' and 'biopsy taken,'" Wilson said.

"I knew at that point that it was not going to be good news."

Wilson was diagnosed with stage four ovarian cancer at 38, nearly three decades younger than the average age of diagnosis.

Ovarian cancer is often missed due to vague symptoms like cramps, bloating, feeling full or frequent urination, which can be mistaken for menstrual or menopause symptoms.

There's currently no early detection test for the disease, and medical misogyny can plays a role in many delayed diagnoses.

Women frequently report having their concerns dismissed by medical professionals, especially males, as 'normal' or being all in their heads.

Wilson was blindsided by the diagnosis, partly because she had no understanding of the disease or what it meant for her.

Trying to find answers was even scarier.

"If you Google survival rates for this cancer, they're absolutely dire," she said.

With more than 30 different subtypes, ovarian cancer is a complex disease to treat, yet treatment options have barely changed in the last 30 years.

And women who get through treatment aren't in the clear either, because there's an 80 per cent chance the disease will come back.

Wilson was terrified her daughters, just four and seven at the time, would be forced to grow up without her.

"Those first few weeks were by far the most terrified and scared and just destroyed emotionally that I have ever been," she said.

Wilson's started with a six-hour surgery to remove three tumours, as well as her ovaries, uterus, part of her bowel and part of her abdominal muscle.

She woke with 52 staples in her gut.

Three weeks after being "sliced and diced", she started chemotherapy.

That went on for 16 weeks, followed by a year of an immunotherapy maintenance drug to keep the cancer at bay.

Wilson was then transitioned to a new medication that studies have shown to be effective at delaying recurrence in patients with her ovarian cancer subtype.

It costs her nearly $7000 a month, and she'll be on it for three years.

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The drug is available for less than $30 through the Pharmaceutical Benefits Scheme (PBS) for ovarian cancer patients with a BRCA mutation or Homologous Recombination Deficiency (HRD).

But Wilson has neither, so she had to pay thousands out of pocket.

"I've withdrawn my entire super fund to pay for the maintenance, which is crazy," she said.

She also had to pay for a chemo cold cap, a $5000 wig and countless medications out of pocket throughout her cancer journey.

"People don't realise the amount of money that you spend."

Though she currently has no evidence of disease, Wilson lives in fear her cancer will return.

She's doing everything in her power to make sure other women don't share her fate as an ambassador for the 2026 Witchery White Shirt campaign.

The campaign supports the Ovarian Cancer Research Foundation (OCRF), with 100 per cent of gross proceeds from every shirt sold going directly to vital ovarian cancer research.

"I wanted to go so public and so loud because of my lack of awareness prior to this, I was actually just ashamed," Wilson said.

"And the lack of funding, the survival rate, the lack of awareness, the lack of women being heard ... I was angry.

"I feel like this happened to me because I have a voice, so I need to use it."

She wants her daughters to grow up in a world with early detection, better treatment and a higher survival rate for women with ovarian cancer.

But that will only happen through research, and research only happens with funding.

The Witchery White Shirt campaign runs from April 7 to May 8. Learn more about ovarian cancer on the OCRF website.