‘I felt completely alone’: Why no one is talking about this rare cancer

Every day, 19 women in Australia are diagnosed with a gynaecological cancer while six lose their lives. It’s a statistic that Brisbane-based Dr Andreas Obermair, one of Australia’s leading gynaecological oncologists and the founder of Cherish Women’s Cancer Foundation, returns to often and one he says can largely be traced back to a single, persistent problem: late detection.

“Ovarian cancer is the biggest contributor,” says Obermair. “The disease is notoriously difficult to catch early because symptoms often appear only in advanced stages. As a result, most women are diagnosed at stage three or four, when outcomes are far less favourable.”

At the same time, Obermair warns that endometrial cancer, now the most common gynaecological cancer, is rising in deaths and may soon surpass ovarian cancer as the leading killer.

Listening to women’s stories is central to early diagnosis. “Many describe symptoms that are subtle, overlapping or easily dismissed, both by themselves and by healthcare providers,” says Obermair. “Women presenting with combinations of symptoms should be offered a physical examination and appropriate imaging, and staying up to date with cervical screening is critical. Early attention can make the difference between life and death.”

Here, three women open up about their gynaecological cancer journeys, revealing how vulnerability, awareness and courage can save lives and inspire others to do the same.

“My journey with vulvar cancer began in 2018, just six months after a hysterectomy for adenomyosis, a uterine condition. Then, six months later, I noticed a row of itchy, sore lumps. If I scratched them, they bled non-stop. The pain was relentless.

A biopsy confirmed it: vulvar cancer. I was stunned. I didn’t even realise such a cancer existed, so the shock hit hard. Another major health battle, so soon after surgery, felt almost cruel. But then my gynaecologist said, ‘It’s treatable. We can get rid of it.’ And that was the thread of hope I clung to.

She also mentioned how I was the only woman in Brisbane with vulvar cancer at the time. Hearing that made me feel oddly special and completely alone simultaneously. To cope, I told myself, ‘Just get through the six weeks. One day at a time.’

I endured 30 rounds of radiation, six long chemotherapy sessions, and burns and blisters that made even sitting unbearable. But through every appointment and every tear, my husband, Richard, was there. He drove me, cared for me and held me together. It was the hardest chapter of my life, but it showed me my own strength and deepened our bond in ways I ne