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 » Cindy, NSW

Cindy, NSW

Cindy’s family has a strong history of neuroendocrine cancer. 

Cindy’s sister was 24 when she got diagnosed with gastrointestinal stromal tumor (GIST) and had surgery to remove a tumor from her abdomen but sadly passed away a few years later from a GIST. 

Two years after the death of Cindy’s sister, her mum was diagnosed with secondary liver cancer and received surgery and chemo but passed away six months later. 

After the death of her mother, her 20-year-old son found a large lump on his abdomen which turned out to be a tumour the size of a small football. 

It was after the diagnosis of her son, that Cindy decided to get genetic testing which showed that she carried the SDHB gene. This prompted her wider family to get checked which highlighted that her two daughters were also carriers.

Watch the full video here. 

Patient Stories

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

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.

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.

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 All

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