Award-winning advocate's cancer journey highlights deadly gaps in women's health screening

When accomplished disability rights advocate Carly Findlay OAM began racing to the bathroom 12 times a day, she did what many Australian women do—she dismissed it as a stomach bug and got on with life. Three months later, surgeons were removing a 25-centimetre tumour from her ovary.

Findlay's story has become a powerful wake-up call for Australian women, highlighting the deadly reality that 1,053 women died from ovarian cancer in Australia in 2021, with an estimated 1,050 deaths expected in 2023.

That's nearly three women dying every day from a cancer that has no early detection test.

A voice for the voiceless faces her greatest challenge

In 2020, Carly received a Medal of the Order of Australia (OAM) for her work as a disability advocate and activist, making her one of Australia's most recognised voices for people with disabilities.

She was named one of Australia's most influential women in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards, and has appeared on major television programs sharing her experiences living with ichthyosis, a rare genetic skin condition.

But in early 2024, this articulate advocate found herself facing an entirely different battle—one that would test not just her physical resilience, but challenge the very healthcare system she'd spent years working to improve.

The symptoms that fool doctors and patients alike

Symptoms that may indicate ovarian cancer are vague and are often related to more common, less serious health problems.

Findlay experienced the classic presentation: frequent trips to the bathroom, loss of appetite, unexplained weight loss, and severe fatigue.

Yet even with her medical knowledge from years of advocacy work, she didn't recognise these as potential cancer symptoms.

Ovarian cancer is often difficult to diagnose due to symptoms being mistaken for other conditions, with both women and their doctors mistakenly attributing ovarian cancer symptoms to common female concerns.

The statistics paint a sobering picture: in 2023, it was estimated that 1,786 new cases of ovarian cancer would be diagnosed in Australia, yet approximately 70 per cent of all ovarian cancer cases in Australia are diagnosed in Stages 3 or 4.

When medical tourism becomes medical emergency

Findlay's symptoms worsened during an international holiday, reaching a crisis point during her flight home to Melbourne. 'I was just laying in the airline lounge feeling terrible, I could barely breathe and couldn't move really well,' she recalled, describing how her abdomen had swollen so severely she could hardly dress herself.

It is often difficult to diagnose ovarian cancer as common tests and scans can only show abnormalities instead of providing a diagnosis, with the only way to currently confirm a diagnosis being by taking a biopsy during surgery.

Within 24 hours of landing in Melbourne, doctors suspected ovarian cancer, but as Findlay discovered, there is currently no recommended screening test for ovarian cancer, even for high-risk individuals, as no existing test can accurately detect early-stage disease.

Double diagnosis, complex treatment

The hysterectomy revealed not just ovarian cancer, but also endometrial cancer—a double diagnosis that would require immediate, intensive treatment.

For someone like Findlay, who lives with ichthyosis, the treatment posed unique challenges.

Carly identifies as a proud disabled woman—she has Ichthyosis and has survived Ovarian and Endometrial Cancer. During treatment, her rare genetic skin condition became severely compromised.

'It was so awful, I was the sickest I'd ever been in terms of my skin,' she explained, describing how the skin on her entire leg and foot shed in one piece.

The treatment also thrust her into medical menopause, creating additional physical and emotional challenges. Despite not planning to have children, the loss of choice profoundly affected her sense of identity and femininity.

Turning pain into purpose through social media

Rather than suffer in silence, Findlay documented her cancer journey for her nearly 100,000 social media followers. This decision would prove life-saving for other women.

'I've had people write to me to tell me that I have helped them get an early diagnosis, because they now know the symptoms,' Findlay revealed.

Her posts about rushing to the bathroom, losing weight, and feeling constantly bloated resonated with women who had been experiencing similar symptoms but hadn't connected them to ovarian cancer.

In January 2025, Carly announced on her blog and social media that she is now cancer free, after several months of chemotherapy and radiotherapy.

From patient to Frocktober ambassador

Carly is pleased to be an ambassador for Frocktober 2025, doing one of her favourite things for charity: wearing a frock every day in October. The campaign, run by the Ovarian Cancer Research Foundation, encourages participants to wear dresses daily throughout October while raising funds for research.

It's a perfect fit for someone who has always used fashion as a form of self-expression and empowerment. Even during her darkest treatment days, Findlay continued posting outfit photos with the caption 'I wore this today and felt f**cking fabulous.'

Her participation in Frocktober 2024, shortly after diagnosis, raised $6,000. Now cancer-free, she hopes to surpass that figure while continuing to educate women about the signs and symptoms that could save their lives.

The sobering Australian reality

Individuals diagnosed with ovarian cancer in Australia have a 49 per cent chance of surviving for five years, but this drops dramatically when the cancer is caught late. If diagnosed at Stage 1, while the cancer is localised, survival rates are over 90 per cent.

Ovarian cancer remains the most lethal gynaecological malignancy, with cases and deaths predicted to increase in Australia by 42 per cent and 55 per cent respectively by 2040.

The harsh reality is that there are currently no tests effective enough for a population-based screening program for ovarian cancer, and there is no evidence to suggest that screening will reduce the number of deaths.

Resources and support for Australian women

If you're concerned about ovarian cancer symptoms, several Australian organisations provide support and information:

• Ovarian Cancer Australia: Call 1300 660 334 (9am-5pm) to speak with a specialist nurse
• Cancer Council: Call 13 11 20 for confidential information and support
• Cancer Australia: Visit canceraustralia.gov.au for evidence-based resources
• Symptom tracking: Download Ovarian Cancer Australia's symptom diary to take to your doctor

If you are concerned about your risk of ovarian cancer, see your doctor for more information and advice, and check your cancer risk with Cancer Australia's calculator.

A message of hope and determination

Findlay's journey from symptoms to survival illustrates both the challenges and possibilities in ovarian cancer care.

Her story reminds us that awareness saves lives, advocacy creates change, and that even in our darkest moments, we can find ways to help others.

As she continues her work as a disability advocate while embracing her new role as a cancer survivor, Findlay embodies the resilience that has defined her career.

Her message is clear: know your body, trust your instincts, and never hesitate to seek help when something doesn't feel right.

After all, as she learned the hard way, some stomach bugs aren't stomach bugs at all.