Patient Stories
Every neuroendocrine cancer story is unique.
Here, people with neuroendocrine cancer and their families have shared their personal stories, offering insight, strength and hope to others navigating life with neuroendocrine cancer. Through sharing these experiences the importance of awareness is highlighted, along with the need for early diagnosis, the importance of understanding the disease, advocacy and enabling support throughout every stage of the neuroendocrine cancer diagnosis.
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Allison, W.A.
- Small Bowel
This experience has made me a firm believer in screening, early diagnosis, and specialist NET care. I feel incredibly lucky — and grateful — that my NET was found at such an early, treatable stage.
Bob, Culburra Beach, NSW
- Small Bowel
Having a family history of cancer, both mother and father, my own diagnosis of NETs probably shouldn’t have taken me by surprise but it did.
Brad, VIC
- Small Bowel
I went and got the diagnosis alone. Probably not a good idea. You hear the first words, ‘You’ve got cancer’ and then you don’t hear another word after that.
Bronwyn, NSW
- Small Bowel
I encourage everyone to share their story—on the NeuroEndocrine Cancer Australia website and within their own communities—so that NETs is recognised and diagnosed earlier. I also encourage fundraising for NeuroEndocrine Cancer Australia if possible.
Chris, WA
- Small Bowel
I have worked in healthcare my entire life I had never heard of NETs until my diagnosis and I’m pretty sure none of the doctors I had seen in the lead up to diagnosis knew about it either.
Denae, SA
- Small Bowel
The NECA NET Nurse gave me so much support and information. The phone support wasn’t rushed like medical appointments, the resources that she emailed me were full of useful information that I could share with my family. I feel better equipped to advocate for myself now. I don’t feel so alone anymore.
Denise, NSW
- Small Bowel
When the histopathology returned six days post-surgery, everything made sense. A slow-growing cancer: Carcinoid, or Neuroendocrine Tumour, a term only just coming into use at that time. My feelings? Overwhelmingly, relief. Validated after two and a half years of being dismissed. Some anger, too, but mostly relief to finally have a diagnosis I could understand and act on.
Denise, TAS
- Small Bowel
The specialist NECA NET Nurse was not only a sympathetic ear, but she was also practical and very efficient. Within weeks, she had secured me an appointment at Peter Mac, with Associate Professor Michael Michael, and for the first time in the many months since diagnosis, I felt heard, safe, and confident that my treatment was in the right hands.
Doreen, Western Australia
- Small Bowel
Through attending NET meetings at FSH I was made more aware of NETS and found friendship and understanding from all who attended plus I had found a ‘home’ where others understood.
Greg, QLD
- Small Bowel
Greg’s symptoms included tiredness, fatigue and diarrhoea.
Jackie, NSW
- Small Bowel
I had an ultrasound for an unrelated medical condition. The radiographer identified a differential diagnosis… a neuroendocrine tumour (NETs).
Jacqueline, NSW
- Small Bowel
When I think about symptoms to diagnosis, it was probably about 7 years.
Jamie, SA
- Small Bowel
In 2010 when Jamie was only 32 years old, with a 6-month-old baby at home and the world at her feet, she was diagnosed with a mid-gut neuroendocrine tumour (NET).
Jeffrey, VIC
- Small Bowel
At age 75, I remain in perfect health and have no symptoms from the disease or treatment. I maintain an active lifestyle and walk 10 kms most days, as well as cycle, swim, kayak and maintain my house and garden. I eat an anti-inflammatory diet and keep my weight in trim.
Kelly, W.A.
- Small Bowel
I had zero tolerance for alcohol … I had overwhelming fatigue.
Linda, TAS & NSW
- Small Bowel
The Doctor mentioned I should start studying as he was very confident of what the diagnosis would be and told me it was very rare and many doctors would not understand or would not have seen it. This was the best advice I ever received.
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