‘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.

Nicola Du Thaler, 58
‘I felt embarrassed to talk about vulvar cancer’

“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 never expected.

Three years later, the cancer returned, requiring radical surgery and a stoma that deeply affected my self-image. With psychological support, I learned to adapt: relearning my body, redesigning my wardrobe and underwear, and enduring a long, complicated recovery marked by pain, infections and limited mobility.

Then, in 2021, my world changed again. Richard was diagnosed with incurable bowel cancer. He passed away in December 2022. Prior, we talked openly about what my future would look like, and he encouraged me to move into public speaking.

I’ve found purpose in speaking about cancer survivorship, at everything from the Clinical Oncology Society of Australia conferences to charity events, earning standing ovations and connecting with women who thanked me for voicing experiences they hadn’t known. I also share my story with nursing and medical students, including radiation therapy students in New Zealand via Zoom, helping them understand the lasting impact of treatment beyond the hospital.

I contribute to the Australia National Vulvar Cancer Trial (ANVU) and support a campaign advocating for QR codes on feminine hygiene products, so women can easily access information about gynaecological cancer symptoms. Early awareness saves lives; I’ve already seen this firsthand. One of my daughter’s friends noticed an itchy spot, got checked and discovered an autoimmune condition linked to vulvar cancer.

I’m still physically adjusting to life with a stoma and weakened muscles, learning to pace myself day by day. With my psychologist’s guidance, a simple routine of small morning tasks followed by rewarding afternoons became an anchor.

My message to women is clear: never ignore your body, seek help early, and accept support. It can make all the difference.”

Meredith Johnston, 53
‘I speak for the women who are no longer here’

“I still remember the day everything changed, back in January 2019. I was at a Pilates class before work, lying on my stomach, when a sudden pain shot through my abdomen. At first, I brushed it off – maybe it was something I’d eaten. But when I rolled over, I felt how rock-hard and unnaturally distended my stomach was. I knew something was wrong. And still, I didn’t want to admit it.

When my workmates in the Science Team at the University of the Sunshine Coast – two of them working in pathology – wouldn’t let it go, their response was immediate and unequivocal: ‘You need to go now. Book an appointment.’ Their urgency cut straight through my denial.

Less than two weeks later, I was in surgery. An ultrasound revealed a 15-centimetre cyst filled with fluid and tissue, which made it visible on imaging. Yet nothing about it initially suggested cancer. During surgery – a full hysterectomy – the truth emerged: stage 1A ovarian cancer.

When I was told the cyst was cancerous, I was unexpectedly calm. The reality only fully landed at my follow-up appointment, when I learned I would need six rounds of chemotherapy. This became one of the darkest periods of my life, despite having generally strong mental health.

I was sustained by my support network – my husband, family and steadfast friends – and by work itself, where even short days in the lab offered grounding moments of normality. By the third week of each cycle, I would slowly resurface, gathering just enough strength before the next round began.

I received my first all-clear in September 2019, when post-treatment scans showed no evidence of disease. The definitive all-clear came in April 2025, when I passed the five-year benchmark for ovarian cancer and was discharged from follow-up care with my gynaecological oncology surgeon.

Now, I volunteer with Survivors Teaching Students, a program that brings ovarian cancer survivors into medical classrooms to share our stories directly with future doctors and other health professionals. Speaking about something so personal is never easy, but I’ve learned how necessary it is.

At first, I questioned whether my experience truly mattered; after all, they treat patients with far more devastating outcomes. But in 2022, I lost a friend to ovarian cancer. Her death was a stark reminder of how fortunate I have been. Over time, I came to understand that the value of my story lies precisely in that luck. Early detection saved my life, and that lesson matters. As one fellow STS volunteer once said to me, ‘You are here, and we need you to tell the story for the women who are no longer here to tell theirs.’”

Amanda Webb, 47
‘Sharing my story has been healing’

“In my early 30s, while preparing to start a family, a routine pre-conception Pap smear in 2012 revealed stage 1B cervical cancer, a devastating diagnosis I never expected.

Because I still wanted children, I chose fertility-preserving treatment: chemotherapy followed by a rare radical trachelectomy [most of the cervix, nearby tissue, and the upper part of the vagina are removed]. The surgeon made no promises, saying only, “This is your best chance.” I knew I’d regret it if I didn’t try. The treatment was brutal, bringing menopause symptoms, fatigue and hair loss, but the surgery showed no remaining cancer and clear lymph nodes.

Eighteen months later, with my husband, Ryan, we turned to IVF. The first cycle failed. I reassured myself the next would work. The second failed. By the third, I let myself believe it might finally happen, but again, nothing.

By the end of 2014, after exhausting all fertility options, my specialist advised considering an alternative path: surrogacy. After initial attempts with a surrogate in India and later exploring a clinic in Cambodia and Ukraine, in 2018 we connected with a wonderful Australian surrogate through a private Facebook group. We spent four months talking online before finally meeting in person. Within two days, she offered to carry a baby for us, and later even donated her own eggs. On the fifth IVF cycle, we finally received the news we’d been praying for: we were going to be parents.

While waiting for our surrogate’s six-week scan in 2020, I felt off, experienced haemorrhages and struggled to eat, fearing my cancer had returned. During the ultrasound the nurse asked, ‘Have you tested for pregnancy?’ I said, ‘Oh, I can’t get pregnant.’ Then they flipped the screen and there it was: a 13-week baby in my belly, conceived naturally, at age, 41. Suddenly, we had two babies on the way, and I just lost it, in the best way. Disbelief, joy and relief all at once.

My pregnancy was complicated, and our son, Ashton, was born prematurely via emergency C-section, spending 70 days in intensive care. In contrast, our surrogate’s pregnancy went smoothly, and I was there to cut the cord as our second son, Brodie, arrived healthy and strong.

Enduring cancer, infertility, surrogacy, pregnancy and months in a Neonatal Intensive Care Unit pushed my husband and me to our limits, yet ultimately it deepened our bond. Sharing our story has been healing: still painful, but gradually lighter, helping me make peace with our journey and offering hope that with time, patience, resilience and support, you can reach the other side.”

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