Share Your story

Patient stories are powerful, they help others, motivate us and raise awareness. We would love to hear from you.

Sharing your experience is one of the most powerful ways to help others understand neuroendocrine cancer. Your story can guide someone newly diagnosed, support a loved one, and help us raise awareness across Australia.

Submit your story

You can share your story with us using the form below, or by email.

We also encourage you to include a photo to accompany your story, as this helps people connect more deeply. Landscape images work best for our website format.

Please note, your story may be:

  • Shared on the NECA website as part of our community stories
  • Included in awareness campaigns such as NET Cancer Day
  • Used to support advocacy by helping decision makers understand lived experience
  • Featured in fundraising campaigns that help grow support services
  • Shared on NECA social media channels to raise national awareness

Your Privacy & Consent

We handle every story with care and respect. Your privacy matters.

  • Your personal information is protected and stored securely
  • Nothing is shared without your written consent
  • You can withdraw or update your story at any time
  • You decide what is public and what remains private

Our team will guide you through every step so you feel supported and in control of your story.

We will always request your approval before your story is published or shared in any format.

Patient Stories

Alison Danis

  • Gastric
My name is Ali and I live in rural/remote SA. Surgeons discovered I had NETs when they were operating on my re-occurring bowel cancer in 2017. A PET scan followed and they found an inoperable NET tumour in my small bowel (primary is unknown).
Read story

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.
Read story

Amanda Massey, QLD

  • Pancreatic
Honestly, pre-NETs now seems like another life for me.  The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.
Read story

Amanda, QLD

  • Appendix
For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.
Read story

Amelia, QLD

  • Pancreatic|Pheochromocytoma|Von Hippel-Lindau Syndrome (VHL)
Von Hippel-Lindau was explained. Genetic testing was sent to Western Australia. My mum Toni, 2 sisters and I all had VHL. I have two children, both Boys. They both have VHL, Belzutifan could change their future
Read story

Amy, NSW

  • Large Bowel
I was diagnosed with NEC high grade small cell neuroendocrine carcinoma in a duplication cyst of my colon. I was born with a duplicate colon I never knew about and my cancer was found within it.
Read story

Angela, ACT

  • Pheochromocytoma
My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance.
Read story

Ann, VIC

  • Pancreatic
If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.
Read story

Ashley, W.A.

  • Pancreatic|Von Hippel-Lindau Syndrome (VHL)
I was diagnosed with Von Hippel-Lindau Syndrome (VHL) in 2016, I am classified as de novo or a mosaic as I am the first in my line having VHL, both of my parents have been tested and neither have the mutation in the Chromosome 3p25.3.
Read story

Birgitte, South Australia

  • Large Bowel
I have fully recovered from the surgery and I’m feeling terrific, and I hardly think about my NET. I am extremely grateful for the early diagnosis.
Read story
View all patient stories

Jump to section