Judi Adams never thought a sore back and occasional stomach pain could be signs of something much more serious — an eight-centimetre tumour.
Her vague symptoms were followed by an "out of the blue" onset of nausea and appetite loss late last year.
Doctors told Ms Adams after a range of medical tests there was a lump in her pancreas.
She went to hospital to have a biopsy of the lump performed and woke from the operation to find out she had pancreatic cancer.
A section of her pancreas and stomach had been removed, along with her spleen.
Ms Adams, 55, had thought her back pain was caused by spending much of her time working in an office environment and experienced "a stitch" when exerting herself.
Cancer often diagnosed late
Pancreatic cancer affects about 3,700 Australians every year.
It is the fourth-most-common cause of cancer death due to a combination of factors.
It is often found after it has spread and unable to be removed.
There is also a lack of effective treatments for advanced disease.
Like many, Ms Adams' vague symptoms "came out of the blue along the way".
She said there was nothing to indicate she had a large tumour in her pancreas.
"A lot of the tests I had seemed to be obscured by the organs that surround the pancreas," she said.
Patient inspired to help others
Ms Adams has long volunteered to raise awareness and fundraise for breast cancer, including by organising Pinktober — the four weeks of the year when landmarks in Brisbane and Tasmania are lit up in pink.
She was named 2018 Tasmanian Local Hero at the National Australia Day Council Australian of the Year Awards after raising more than $400,000 for breast cancer research.
"I wanted to turn my experience outwards in order to help others and to ensure people were aware of what pancreatic cancer symptoms might look like," she said.
Study highlights early symptoms
Ms Adams said she discovered medical research institute, QIMR Berghofer, was conducting a study about pancreatic cancer.
The Pancreatic Cancer Pathways to Diagnosis Study, led by Rachel Neale, aims to identify the early signs and symptoms of cancer and understand what symptoms first lead to diagnosis.
The study involves completing a questionnaire on paper form or online, and asks about education and lifestyle factors, as well as an assessment of how people have adjusted to their diagnosis of pancreatic cancer.
Participants will also be interviewed by telephone or video conferencing to discuss symptoms and their journey to diagnosis.
Professor Neale said the Pathways Study was still looking for 150 participants who had been diagnosed with pancreatic cancer in the past six months.
"Many people tell us about the long and difficult process to diagnosis," she said.
Professor Neale said pancreatic cancer patients could access better treatments and surgery if they were diagnosed earlier.
"Even if we can't help people live longer, we can give them a bit more time to adjust to their diagnosis and more opportunities to participate in clinical trials to find new treatments that might help people in the future," she said.
Reducing burden of diagnosis
The Pathways Study cancer epidemiology and project officer, Bridie Thompson, said there were already 40 people who had shared their early signs and symptoms.
She said the process of getting a diagnosis could be distressing for patients and the study aimed to reduce that burden.
"We're really interested in knowing the time from the first onset of symptoms to seeking medical attention and then receiving a definitive diagnosis," she said
