For five years, Zoey Sweeney was told her fatigue, stomach issues and hot flushes were nothing but irritable bowel syndrome, and possibly early menopause.
She had test after test, removed different foods from her diet, tried to exercise more and eat healthier but nothing changed.
"I remember saying to my partner, 'one day someone will work out what's wrong with me'."
It wasn't until she had an unrelated ultrasound, that Ms Sweeney had her answer.
"It ended up being a neuroendocrine tumour. I think it was four centimetres... I went and had a PET scan in Sydney and they found 28 tumours in my liver and one in my small intestine," she said.
She was diagnosed with stage four neuroendocrine cancer.
"Had it been a more common cancer, it would have been picked up straight away. But because no one ever assumes you have a rare cancer, it was overlooked and called irritable bowel syndrome," Ms Sweeney said.
"There's a chromogranin A blood test you can get, it's a simple blood test, and doctors just don't do it. They're always told when you hear hoof beats, think horses not zebras, because hoof beats are the average, and it took for a very, very smart liver specialist to actually work out what was going on."
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Day-to-day, Ms Sweeney is used to the side effects from the cancer.
High fat foods like sausages will send her straight to the emergency department - where she has to explain to the medical staff what neuroendocrine cancer is - and she has to ration out her energy throughout the day to make sure she has enough to teach dancing in the afternoons.
She also has to have an injection once a month to help stabilise the tumours - which comes with its own range of side effects.
But despite everything, Ms Sweeney considers herself fortunate, especially during her monthly visits to oncology when she sees what others with cancer are going through.
"My diagnosis won't change, eventually it will just change to palliative care, but not anytime soon based on what my scans are showing. So I'm very lucky," she said.
When she was diagnosed in 2019, it was two weeks after buying Orana Dance Centre, in Dubbo in NSW's Central West, so Ms Sweeney kept it quiet. She wanted to prove she could run the business without anyone feeling sorry for herself.
Plus, teaching kept her mind off everything.
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But recently, when she saw two people with neuroendocrine cancer die within two weeks, including a young woman in her 30s, Ms Sweeney said it was time to start speaking out.
"There are other people going through it who just don't have the energy [to raise awareness]. I'm young and I've got energy at the moment, I may as well do a bit for the cause," she said.
"Steve Jobs and Aretha Franklin both died of neuroendocrine cancer, and no one knows. They could have used their massive platforms to raise awareness of it but they never did... I'm not the kind of person to carry on about it either but it's about time we all carry on a bit."
November 10 was Neuroendocrine Cancer Day. To make the occasion the students at Orana Dance Centre in NSW's Central West were encouraged to dress in black and white zebra print to raise awareness.
Ms Sweeney is also raising money for Neuroendocrine Cancer Australia. Donations can be made here.
But if nothing else, she's hoping to get one simple message out: "If your doctor thinks you've got irritable bowel syndrome and that's not what you think it is, you need to get tested for neuroendocrine cancer".
Orlander Ruming
Deputy editor at the Daily Liberal, covering council, politics, human interest stories, community news and everything in between.
Deputy editor at the Daily Liberal, covering council, politics, human interest stories, community news and everything in between.
