Her doctors said it was fibroids, the coroner told a different story

Every day in Australia, two women lose their lives to uterine cancer, yet a staggering 94 per cent of women have never even heard of the disease.

To honour their younger sister, Stephen and Scott Crerar are sharing her story to shine a light on uterine cancers this June for Uterine Cancer Awareness Month.

They hope it serves as a vital reminder to never ignore persistent symptoms like fatigue, bloating, pelvic pain, abdominal swelling, and rapid physical changes.

When severe abdominal pain and swelling struck 56-year-old Simone in April 2025, doctors initially blamed uterine fibroids and sent her home with pain medication.

Within weeks, her health took a rapid turn for the worse.

Her pain became increasingly severe, her abdomen became grossly swollen, and she grew weaker.

Despite the dramatic progression of her symptoms, Simone's illness continued to be treated as fibroids, recalled brother Stephen.

"The radiology service diagnosed it as fibroids, even though later the coroner said to us that it was incredibly obvious that it was a cancerous mass," Stephen said.

"She went to have an ultrasound and should have had an intravaginal ultrasound, but they only did a basic external one and assumed the same thing.

"Her condition worsened dramatically and the GP didn't do anything - no further testing, no escalation, no further analysis or getting any more opinions. It was just like a snowball effect."

A specialist appointment was eventually arranged for early July 2025, but Simone's health deteriorated dramatically before she could attend.

On July 3, 2025, she died alone at home on the Far South Coast in her sleep.

The brothers said no woman should die misdiagnosed, and believed a devastating gap in funding and medical testing cost their sister her only fighting chance.

"It was a huge shock because being undiagnosed, we just all thought it was fibroids and it could be rectified, whereas if it was diagnosed as cancer, she would have had a fighting chance," Stephen said.

"She would have had cancer support and good medical care to try and fight it, but she didn't have that opportunity unfortunately. She died not knowing."

Stephen expressed hope for a significant shift in how uterine cancers and masses were managed.

He said CT scans and ultrasounds were not foolproof, and he believed the current model of care urgently needed to change.

"We need to be able to do every single test until there's a definitive diagnosis," he stressed.

"If someone's got a lump in their breast, there's a biopsy taken and they know exactly what they're dealing with, but uterine cancer seems to be the poor cousin of women's cancers and doesn't get much funding or attention.

"When there's a mass there, we know there's a mass there. It's not rocket science to go and test it and find out what it is. It's not mysterious, it's showing up.

"She never had any major illnesses in her life and that's part of the problem. She trusted the health professional.

"She trusted that they know what they're doing and probably got it right. But she didn't even make it to the specialist appointment.

"No woman should die undiagnosed and without proper support while actively seeking medical help."

ANZGOG (Australia New Zealand Gynaecological Oncology Group) is calling for urgent awareness and research funding to combat a rising disease that is preventable in up to 60 per cent of cases.

Professor Clare Scott, chair of ANZGOG and a leading gynaecological cancer expert, highlighted that patients with rare cancers faced a critical deficit in medical expertise, timely diagnosis, and available treatments.

"The real signature symptom for uterine cancer is vaginal bleeding. Very often women aren't aware that if they have that abnormal bleeding issue, it should be checked out immediately," Professor Scott said.

"So, if you've got someone who's younger before the time of menopause then obviously it depends a little bit on what's going on in their cycle, but if it's not normal for them, they should get it checked out, and after the time of menopause [too]."

Professor Scott urged people to remember a simple phrase: "If your symptoms persist, persist in seeing a doctor."

She noted that patients should switch doctors if they feel they have been misdiagnosed.

Uterine cancer remains among Australia's worst-funded cancers. Between 2003 and 2020, uterine cancer received $18 million in research funding, compared to $442 million for breast cancer.

Adjusting for incidence rates, this creates a 421 per cent funding gap per person diagnosed, Professor Scott explained.

Consequently, women with advanced uterine cancer have 11.5 times fewer treatment options available to those with metastatic breast cancer.

"In the last 30 years we can see the improvements that have occurred through every aspect of care, research and treatment for breast cancer. That's how we got the great results," Professor Scott said.

"But it is so hard to do that for gynaecological cancers. The only way you can do it is by actually putting more funding in by recognising the inequity."

For more information, visit the ANZGOG Uterine Cancer Education Hub