Fastest-growing women’s cancer lays bare funding failure in genomics and novel medicines

Australia’s fastest-growing women’s cancer is largely preventable, yet awareness remains low. New national data show uterine cancer incidence has more than doubled over the past 25 years, with diagnoses among younger women projected to rise by up to 60% by 2035.

Marking Uterine Cancer Awareness Month this June, the Australia New Zealand Gynaecological Oncology Group (ANZGOG) has released new national findings and is calling for greater awareness, improved access to molecular testing and treatment, and increased investment in innovative medicines to help curb the rise of a disease that is preventable in up to 60% of cases.

“The data in the State of the Nation report is a wake-up call. The number of uterine cancers is growing faster than any other women’s cancer type in Australia, it is disproportionately affecting younger women, and in many cases it is preventable. We have a window of opportunity to act, and we must take it,” stated Professor Clare Scott AM, ANZGOG Chair.

Despite advances in understanding and treating uterine cancer, significant inequities remain in access to best-practice care. Key barriers include the lack of funded access to essential genomic testing and delays in securing Pharmaceutical Benefits Scheme (PBS) funding for medicines already available in comparable countries.

The molecular characterisation of uterine cancers through the work of the Cancer Genome Atlas has ushered in a new era of precision medicine. International guidelines now recommend POLE molecular testing as part of the pathology work-up for endometrial cancers.

Current immunohistochemistry testing can identify three of the four recognised molecular subtypes of uterine cancer. However, it cannot detect POLE mutations and lacks the precision needed to accurately estimate relapse risk. As a biomarker, a POLE mutation is considered likely to outrank all other histological features and molecular markers in predicting the risk of relapse.

Yet despite its clinical significance, POLE testing is not funded in Australia.

While Medicare Benefits Schedule (MBS) funding is available for immunohistochemistry, data collected by the National Gynae-Oncology Registry (NGOR) suggest broader molecular testing remains limited. According to NGOR, 98% of tumours are assessed for mismatch repair deficiency (dMMR), but testing rates for other precision medicine biomarkers are substantially lower. The registry reports that oestrogen and progesterone receptor testing is completed in 76% of tumours, p53 testing in only 40% of tumours, and POLE testing in just 2.7% of cases. This low uptake reflects the absence of funding for these tests.

As a result, almost no woman diagnosed with uterine cancer receives a complete molecular diagnosis of her specific cancer subtype, potentially limiting access to more personalised treatment approaches.

The consequences of low awareness and missed diagnoses are brought into sharp focus by the death of Simone Crerar in July 2025 at the age of 56.

Over a nine-week period, Simone experienced severe and progressively worsening abdominal pain, swelling and fatigue. Despite escalating symptoms, her condition was assessed as uterine fibroids. Both a CT scan and ultrasound supported a fibroid diagnosis, and no definitive cancer testing was undertaken. Simone died before she could attend a specialist appointment for which she had been waiting.

A post-mortem examination later confirmed metastatic uterine leiomyosarcoma, a rare and aggressive form of uterine cancer that had spread to her liver.

“No woman should die undiagnosed and without proper support while actively seeking medical help. By sharing Simone’s story, our family hopes to raise greater awareness of uterine cancers and the importance of properly investigating persistent symptoms so that other families do not experience the same loss,” reflected Scott and Stephen Crerar, Simone’s brothers.

Treatment access remains another area of concern.

In Australia, carboplatin and paclitaxel are subsidised through the PBS and are recognised as the most effective chemotherapy treatments for advanced endometrial cancer, with demonstrated survival benefits for patients. In recent months, immune checkpoint inhibitor therapies have been approved for first-line use in combination with platinum-based chemotherapy. However, access remains limited to tumours with dMMR.

Beyond this, the only other approved therapy is the combination of MSD’s Keytruda (pembrolizumab) and Eisai Australia’s Lenvima (lenvatinib) as a second-line treatment, regardless of dMMR status. This leaves Australian patients with fewer funded treatment options than in the United States, United Kingdom and Canada, where women have funded access to a broader range of targeted therapies.

Every day in Australia, close to 10 women are diagnosed with uterine cancer and two die from the disease.

The report states that improving access to genomics and novel treatments through streamlined regulatory pathways and greater investment in clinical trials is critical to improving outcomes for women with advanced, rare and recurrent uterine cancers. It argues that addressing these gaps is essential if Australia is to close the growing divide in cancer care between local patients and their international counterparts.

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