Neve’s story – juvenile ovarian cancer

By Rob Clancy, staff writer

Dr Simon Chu researches treatment for juvenile granulosa cell tumours.
Dr Simon Chu

Seeing their baby diagnosed with a rare ovarian cancer (ROC) before her first birthday instantly made one Central Victorian family advocates for medical research. Here they share Neve’s juvenile ovarian cancer story.

Neve at 11 months old on the day of her rare ovarian cancer surgery.
The day of Neve’s ROC surgery

Baby Neve was just 11 months old when scans showed she was diagnosed with the rare ovarian cancer, Juvenile Granulosa Cell Tumour (jGCT), the size of a softball.

Youngest Australian diagnosed with jGCT

Ovarian cancer is the most deadly of the gynaecological cancers and is usually thought of as a disease affecting older women, but jGCT can affect girls and women at any age, with Neve the youngest Australian to be diagnosed. The oldest was aged 52.

Leading the global research effort into Granulosa Cell Tumours is Dr Simon Chu from Hudson Institute’s Hormone Cancer Therapeutics Research group, who says only five to seven per cent of ovarian cancers are the Granulosa Cell Tumour type, and the juvenile form are only a fraction of that.

“It’s understandable that most research funding targets the more common forms of ovarian cancer,” Dr Chu said, “But unlike those cancers, these tumours can appear in young girls, and they are generally deadly for girls/women who have recurrences.”

Neve’s mother Jo is full of praise for Dr Chu’s research: “The research Dr Chu and the Hudson Institute team are putting into this rare ovarian cancer is the start of what could be a breakthrough for treatment and prognosis of reoccurrence in females of any age with jGCT,” she said.

Neve is now eight, but a juvenile ovarian caner cure is needed

8-year-old Neve, who was treated for a juvenile granulosa cell tumour at 11-months old, a rare ovarian cancer.
8-year-old Neve, who had a juvenile granulosa cell tumour before her 1st birthday

“For us, it is hope for a cancer free future for our daughter. Neve is now eight-years-old and so far thriving in her life, we want only for this to continue, to be happy and healthy. Finding the cure will be the ultimate bonus.”

Dr Chu knows the scope of the task ahead of him: “The human genome is like a collection of 25,000 small books, where each book represents a gene. Finding a spelling mistake in one of these books might uncover the cause of a cancer, or it could point to a cure.”

“Our study looks for genetic mutations that can give us an understanding of how Granulosa Cell Tumours arise, as well as point us to what current drugs can be used to target these mutations by drug repurposing,” he said.

February was Ovarian Cancer Awareness Month, and Neve and her parents are hoping more funding will be made available to research jGCT, to give new hope to patients and their families with juvenile ovarian cancer.


  • Approximately five per cent of ovarian cancer sufferers have a subset of the disease known as granulosa cell tumours (GCT), which can develop at any age, even in children.
  • The condition has a high rate of late recurrence, meaning even if surgery is effective, women live fearing their cancer might return.
  • Dr Simon Chu’s Hormone Cancer Therapeutics research group is striving to bring hope to children and women with granulosa cell tumours – through better diagnosis, early detection and more targeted treatment.

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“Thank you Hudson Institute researchers. Your work brings such hope to all women with ovarian cancer knowing that potentially women in the future won't have to go through what we have!”

Alana Chantry