Neuroendocrine cancer survivor calls for state government help

Rob Hammond’s life has been devastated by neuroendocrine cancer, and though he considers himself one of the lucky ones, he says more needs to be done to save lives.

Frustrated with his own misdiagnoses, Rob Hammond launched a fundraiser, Racing for a Cure, in 2022 to fund a specialist neuroendocrine tumour (NET) nurse. Picture: Stephanie Dalton

Rob Hammond has witnessed first hand the deadly consequences of neuroendocrine cancer after the disease kill his brother and sister.

Now after fighting to be diagnosed with stage four pancreatic neuroendocrine cancer in 2019 following years of tests and misdiagnoses, he considers himself “one of the lucky ones”.

“I say if I make it to 70, I’ll be happy,” Mr Hammond said.

“But in that time, I want to make a difference - not for me but for my children, grandchildren, my nieces and nephews, and those who are no longer with us.”

Frustrated with his own misdiagnoses, he launched a fundraiser, Racing for a Cure, in 2022 to fund a specialist neuroendocrine tumour (NET) nurse.

He has raised more than $160,000 over three years.

“It just feels like the state government just don’t care or have any compassion for NETs patients,” he said.

“I just want to be treated equal like other cancer patients. We just want one nurse.

“To put this into perspective, breast cancer patients have one specialist nurse for every 100 newly diagnosed patients.

“Many have to pay for necessary scans or medication out-of-pocket - what other cancer does this happen with?”

Frustrated with his own misdiagnoses, Rob Hammond launched a fundraiser, Racing for a Cure, in 2022 to fund a specialist neuroendocrine tumour (NET) nurse. Picture: Stephanie Dalton

Neuroendocrine Cancer Australia chief executive Meredith Cummins said the disease was treatable when caught early, but of the 25,500 Australians living with NETs, more than half were initially misdiagnosed.

“It’s a long road for most people to get diagnosed correctly because of the lack of awareness of the disease and the often vague symptoms,” Ms Cummins said.

“More than 60 per cent of patients in Australia have stage four disease by the time that they’re actually diagnosed, which means that they’re no longer curable.”

A Senate Inquiry into equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer in Hobart in February, recommended a specialist NET nurse in Tasmania.

When asked if the state government would do so, Minister Jo Palmer said work was underway to address the significant barriers faced by patients.

“We as a government are really looking at cancer treatment across the state in a very holistic way,” she said.