Duodenal Neuroendocrine Cancer

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.

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.

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.

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.

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.

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.

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.