Poor investment in gynaecological cancer research leading to 'crisis for women', experts warn

Alex Neville doesn't know how long she'll live.

The mother of four has endured surgery, 27 rounds of radiation, 13 chemotherapy cycles, immunotherapy and is now on a clinical trial.

In 2020, the 56-year-old was diagnosed with endometrial adenocarcinoma, a gynaecological cancer.

When Ms Neville first raised a change in her periods with her doctor, she was told it was to be expected for a woman her age.

"I didn't panic and I should have … I'd never actually heard of endometrial cancer," Ms Neville said.

"When the bleeding continued and actually became constant bleeding, I still just thought this was part of menopause."

Living in northern Tasmanian, Ms Neville could only receive some treatments in Launceston and had to make a five hour round trip to Hobart for certain specialists.

After her diagnosis, she underwent a radical hysterectomy which included her ovaries.

Ms Neville gave up her job as a psychologist but credits her "health literacy" with giving her the knowledge and strength to advocate for herself.

In 2023, after feeling some tenderness in her abdomen, doctors discovered Ms Neville's metastatic cancer had spread to her liver and spleen and was now inoperable and incurable.

'My time stood still'

Mother of three, Ali Crawford also doesn't know how long she will live.

Ms Crawford, 51, was diagnosed in 2022 with uterine leiomyosarcoma, which, like around 55 per cent of gynaecological cancers, is considered rare and has limited treatment options.

Her treatment is ongoing and she's now had more than 30 hours of surgeries and 11 cycles of chemotherapy.

Like Ms Neville in Tasmania, she felt her initial concerns were dismissed and precious time was wasted getting a diagnosis.

"Eight-and-a-half weeks it took for diagnosis," Ms Crawford said.

Ms Crawford struggled to get scans and in desperation used a family connection.

"I felt so guilty using our contacts to get an urgent scan, but I knew I had a ticking time bomb in my pelvis," she said.

In April 2022, Ms Crawford underwent a major de-bulking hysterectomy that removed her uterus and surrounding organs.

A month later her bladder, rectum, pelvic floor and part of her abdomen were also removed.

A year later, she received the devastating news that she had incurable metastatic cancer.

"Living with this disease, this cancer, people aren't aware that it is a full time job," Ms Crawford said.

"So much else in my life has to fall away to try and survive."

'A crisis for women'

Ms Crawford and Ms Neville are two of about 7,000 women diagnosed each year with gynaecological cancers. A figure which has more than doubled since the 1980s.

Both women have joined a campaign led by the Australia New Zealand Gynaecological Oncology Group (ANZGOG) calling for more investment in gynaecological cancers which includes ovarian, uterine, endometrial, cervical, vaginal and vulvar cancers.

ANZGOG — which works with groups that research gynaecological cancers — says "underinvestment in research has led to a crisis for women".

ANZGOG brought together organisations including Ovarian Cancer Australia and the Ovarian Cancer Research Foundation to form the Gynaecological Cancer Transformation Initiative (GCTI).

They want the federal government to commit $100 million over four years to improve support, treatment through molecular profiling, and further research.

ANZGOG commissioned a report by Insight Economics, which found that 23 women will be diagnosed with a gynaecological cancer every day by 2035.

For nearly two decades, gynaecological cancers have been among the poorest funded cancers, the report found.

Chair of ANZGOG, Professor Clare Scott said she was "crying on the inside" when she read the report.

"For most gynaecological cancers that recur and cause a woman to have what we call metastatic cancer, the survival rates are as poor as the survival rates for all cancers 50 years ago," Professor Scott said.

Professor Scott, a medical oncologist and researcher, said it was hard to get funding because people didn't want to talk about gynaecological organs and cancers.

ANZGOG has also harnessed the support of 150 community volunteers in their campaign — which includes terminally ill women, their carers and the bereaved — to raise awareness by taking the report to their local MPs during the election campaign.

Rare Cancers Australia CEO Christine Cockburn said ANZGOG's proposals would contribute to a "critical advancement for people with rare and difficult to treat cancers who have been left behind for too long".

Women who were diagnosed with gynaecological cancers faced significantly worse outcomes compared to those with more common cancers, she said.

"Much needed reform and change is needed to address this outrageous inequity in our cancer system," she said.

"Importantly, the [ANZGOG] program will also address our incomplete understanding of the molecular make up of rare cancers, which currently limits treatment options and leads to premature death for far too many Australians."

Believing for better outcomes

In between her chemotherapy treatments, Ms Crawford met with the Member for Wentworth, Allegra Spender, to discuss the ANZGOG report and appeal for support.

"I hope that our voices are heard," Ms Crawford said.

"I hope that no woman has to go through what I have gone through, that there are better options and better treatment outcomes."

Ms Crawford said she preferred to think of her cancer as a "chronic disease" so she could keep receiving treatment with hope and without fear.

"Prognosis isn't important because I'm keeping myself safe," she said.

Ms Neville has been on a clinical trial since November.

"I've approached it like a curious scientist in some ways … what I'm doing now as a clinical trial will hopefully be a first line treatment for a woman in the future," she said.

Ms Neville said having incurable cancer had stripped back the way she looked at what was important in life.

"People started asking me about bucket lists … well actually none of that matters anymore … having a cup of tea with my daughters is the thing to do."

Ms Neville's twin 24-year-old daughters are studying medicine.

"What I hope most is that when I do pass away, what they are left with, is this sense of love, support, courage and bravery."

While she has responded well to her current experimental treatment and feels "fantastic," Ms Neville said cancer was "sneaky."

"I'm hoping that I do this clinical trial, I'll buy a bit more time, and then once it starts to progress again, then I find another clinical trial, and we go again."

Additional reporting by Paige Cockburn