Patient Stories

I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

My days and months have been spending time and money on and in medical appointments, tests and scans, rooms, clinics and medications and listening to profoundly specialised medical jargon, which is not always explained fully and sometimes assumed to be common knowledge,

The hardest thing has been actually finding out what was wrong with me. No-one could tell me for months and the toll it took on me and my family was devastating. The lack of knowledge of NETs amongst the medical fraternity amazed me. Still a long way to go.

The results showed 15 tumours in my liver. Within days I had a biopsy, which confirmed it was a neuroendocrine tumour. I had never heard of this type of cancer prior to being diagnosed.

My story shows the inequity patients living with neuroendocrine carcinoma. Cancer is cancer. It should not matter what type you have. Every patient deserves the same access to life-saving treatment.

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.

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

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.

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

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.