Patient Stories

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.

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.”

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.

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.

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.

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”.

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.

The Emergency Department completed scans and told me I had appendicitis. When they transferred me to another hospital for surgery, the doctors noticed a small lump in my bowel and investigated further. I was told I had cancer, and no other information was provided at that time.