Fact Sheets
Patient Resources
Explore essential tools to help you understand and manage life with a neuroendocrine cancer.
From fact sheets to symptom management tips, these resources are designed to support you every step of the way.
Fact Sheets
Carcinoid Crisis
Fact Sheets
Carcinoid Crisis and Anaesthesia
Fact Sheets
5HIAA
Fact Sheets
Carcinoid Heart Disease
Fact Sheets
Carcinoid Syndrome
Fact Sheets
Clinical Trials
Fact Sheets
Complementary Therapies
Fact Sheets
Diagnosing Phaeochromocytomas and Paragangliomas (PPGLs)
Fact Sheets
Exercise The Facts
Booklets & Guides
Access downloadable booklets and easy-to-read guides covering all aspects of neuroendocrine cancer care.
Perfect for learning more about diagnosis, treatment options, and living well with neuroendocrine cancer.
Booklets & Guides
Neuroendocrine tumours: A guide for patients and carers
Booklets & Guides
Neuroendocrine tumours: A guide for healthcare professionals
Booklets & Guides
About NETs
Booklets & Guides
Acronyms & Terminology for Neuroendocrine Cancer Patients
Booklets & Guides
Associated Conditions
Booklets & Guides
Basic Testing sheet for GastroEnteroPancreatic (GEP) Neuroendocrine Tumors (NETs)
Booklets & Guides
Diagnosis
Booklets & Guides
Diet
Booklets & Guides
Living with a NET
Booklets & Guides
Medical Management
Optimal Care Pathway
Learn about the nationally recognised Optimal Care Pathway for neuroendocrine tumours.
This pathway outlines best-practice care to help patients, families, and clinicians navigate each stage of care together.
Booklets & Guides
The Guide to Best Cancer Care for Neuroendocrine Cancer
Booklets & Guides
Quick Reference Guide
for Healthcare Professionals
Educational Videos
Optimal Care Pathway for Neuroendocrine Tumours (NETs)
HCP Videos
Neuroendocrine Cancer Symptoms: Full Interview with Dr David Chan
Booklets & Guides
Neuroendocrine tumours: A guide for healthcare professionals
Clinical Trials
Stay informed about current and upcoming clinical trials across Australia.
Find out what’s involved, who can participate, and how research helps advance treatment for neuroendocrine cancer.
Fact Sheets
Clinical Trials
Clinical Trials
AUS-NET – Neuroendocrine Tumours
To improve patient quality of life and develop a cost-effective system that can be implemented across other rare cancers in the future.
Clinical Trials
Compose GEP-NET Phase III Trial
A phase III clinical trial investigating a new treatment option for advanced neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NETs)
Clinical Trials
ONJCRI Immunotherapy Trial: Nivolumab & Ipilimumab for Rare and Advanced Cancers
This protocol provides an important opportunity to establish whether the combination of nivolumab & ipilimumab has efficacy in these cancers.
Clinical Trials
PARP Inhibitor With 177Lu-DOTA-Octreotate PRRT in Patients With Neuroendocrine Tumours (PARLuNET)
PARLuNET is a phase 1 dose-escalation study designed to evaluate the safety and tolerability of talazoparib (PARP Inhibitor) in...
Clinical Trials
Phase 3 Trial of CAM2029 vs Standard Treatments in GEP-NET Patients
The purpose of this study is to compare the effectiveness and safety of CAM2029 to octreotide LAR or lanreotide ATG in patients with advanced, well-differentiated GEP-NET.
Video Resources
Watch expert explainers, patient stories, and educational webinars on neuroendocrine cancer.
These videos provide practical insights and real experiences to help you better understand neuroendocrine cancer.
Advocacy & Awareness Videos
Brad’s Story
Educational Videos
Brisbane NET Forum 2019 Hereditary Syndromes AMANDA LOVE
Educational Videos
Cardiac Issues in NETs – Dr Daniel Cehic
Educational Videos
Facebook Friday – 20/8/2021 Advanced care planning
Educational Videos
Facebook Friday – 27/11/2020 – Meredith Cummins, Let’s talk about educating our GPs about NETs!
Educational Videos
Facebook Friday – Let’s talk about Palliative Care with Dr Sonia Fullerton
Educational Videos
Facebook Friday – Let’s talk about surgery with Prof Jas Samra
Educational Videos
Facebook Friday 05/06/2020 – Somatostatin Analogues
Educational Videos
Facebook Friday 07/05/2021 – Talking about NETs , allergies & carcinoid crisis, with Dr John Leyden
Educational Videos
Facebook Friday 12/02/2021 – Informed Financial Consent, guest Megan Varlow (Cancer Council Aust.)
Patient Stories
Read real stories from people living with neuroendocrine cancer and their families, sharing lived experience, hope, and the importance of awareness, early diagnosis and support.
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).
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.
Amanda Massey, QLD
- Pancreatic
Honestly, pre-NETs now seems like another life for me. Â The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.
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.
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
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.
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.
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.
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.
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.
