Skip to content
  • About
  • Shop
  • News
  • Contact Us
Search
NECA Logo
  • NET Nurse
  • Donate
  • What are NETs?
    • What are Neuroendocrine Cancers?
    • What are Pheos & Paras?
    • NET Symptoms
    • NET Types
    • Causes
    • Treatments
    • Grades
    • Diagnosis
    • Prognosis
    Consider the Grey Area
  • Patients & Carers
    • Patient & Carer Support
    • Patient Resources
    • Optimal Care Pathway
    • NET Nurse
    • Patient Stories
    • Share your Story
    • Australian NET Specialists
    • Clinical Trials
    • Living with NETS
    • Specialist Support Services
    Consider the Grey Area
  • Healthcare Professionals
    • Optimal Care Pathway
    • Professional Learning
    • Patient Referral
    • Clinical Trials
    • NET Symptoms
    • Australian NET Specialists
    • Request an In-Service
    • PLANET Registry
    • Order Booklets & Resources
    Consider the Grey Area
  • Get Involved
    • Advocate for Us
    • Share your Story
    • Donate
    • Fundraise
    • Events
    • In Memoriam
    • Corporate Partners
    • Gifts & Wills
    • Volunteer
    Senate MailChimp
  • March4NETs
NET Nurse
Donate

Home » Patient Stories

Patient Stories

Read more about the experiences of fellow NET patients and also check out our Patient Stories videos on Youtube.

Cassie, QLD

I’m a 36-year-old mum of three little humans – things like this just doesn’t happen to people like me. Until all of a sudden it does, and everything changes
View Cassie, QLD's Story

Lana, NSW

Blurry vision had led to a diagnosis of Von Hippel-Lindau (VHL) disease – a condition where multiple tumours grow in various parts of the body, including the brain, spinal cord, abdominal organs, and eyes.
View Lana, NSW's Story

Simon, VIC

We need greater awareness of VHL, better education for healthcare professionals, and up-to-date resources to guide patients through diagnosis and care.
View Simon, VIC's Story

Vanessa, ACT

I was in my late twenties when I first realised something wasn’t right. I began experiencing numbness in my back, and after months of tests and uncertainty, doctors discovered a cluster of tumours in my spine. That’s when I was diagnosed with VHL.
View Vanessa, ACT's Story

Patricia, NSW

There’s such little awareness about this cancer, even among medical professionals. I’ve had GPs say to me, “I’ve never seen a neuroendocrine cancer patient in my life.” And I tell them, “You probably have — you just didn’t diagnose them.”
View Patricia, NSW's Story

Jo, QLD

In that moment, everything just crumbled. One minute, I was thinking I’d be home in a day or two. The next, I was being told I had stage-four, inoperable cancer.
View Jo, QLD's Story

Bronwyn, NSW

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.
View Bronwyn, NSW's Story

Chris, WA

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.
View Chris, WA's Story

Coko, NSW

I have four beautiful daughters, I’m a solo mum, they are my favourite part of life. I’ve been diagnosed with Neuroendocrine Cancer stage 4. I remember feeling a lump on my hard pallet, I remember the moment the Dr said “I’m really sorry, but it’s cancerous”.
View Coko, NSW's Story

Terri, VIC

I know that if there was more understanding of the disease and its effects my experience wouldn’t have been so isolating. The lack of knowledge within the medical profession was really shocking to me, as was the lack of information and support offered after diagnosis.
View Terri, VIC's Story
Page1 Page2 Page3 Page4 Page5 Page6 Page7 Page8 Page9

Subscribe to Newsletter

NECA Logo
registered charity badge

What are NETs

  • About Us
  • Our People
  • Our Ambassadors
  • Consumer Advisory Group
  • International Advisory Panel
  • Governance & Policies
  • About Us
  • Our People
  • Our Ambassadors
  • Consumer Advisory Group
  • International Advisory Panel
  • Governance & Policies

Patients & Carers

  • What are Neuroendocrine Cancers?​
  • Pheos and Paras
  • NET Library
  • What are Neuroendocrine Cancers?​
  • Pheos and Paras
  • NET Library

Healthcare Professionals

  • Patient resources
  • NET Nurse
  • Patient Stories
  • Australian NET Specialists
  • Current Open Clinical Trials
  • Patient resources
  • NET Nurse
  • Patient Stories
  • Australian NET Specialists
  • Current Open Clinical Trials

Get Involved

  • Shop
  • Donate
  • Volunteer
  • Current Fundraising Campaigns
  • Fundraise
  • Shop
  • Donate
  • Volunteer
  • Current Fundraising Campaigns
  • Fundraise
All charity donations to NeuroEndocrine Cancer Australia may be tax-deductible in Australia.

Registered Charity CFN 202607
© 2025 NeuroEndocrine Cancer Australia
  • Website by Five Creative
Twitter Facebook Youtube Instagram Linkedin