Patient Stories Archive - NeuroEndocrine Cancer Australia

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.

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.

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”.

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.

Michael, QLD

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.

Chris, VIC

Looking back over the last few years the symptoms were always there but life gets in the way and you dismiss them. To say I was in shock was an understatement. I was numb. I’m 42 years old with 2 children and a wife and family, I can’t get cancer.

Brad, VIC

I went and got the diagnosis alone. Probably not a good idea. You hear the first words, ‘You’ve got cancer’ and then you don’t hear another word after that.

Brian, ACT

Brian had really no clear symptoms (of Neuroendocrine Cancer) and if he hadn’t complained about a sore arm I am not sure what would have happened.

Mary, Joyce and Mishy, QLD

Belzutifan. It is very expensive. What is the point of having the medication if no one can use it? We really want to get this (Belzutifan) accessible for everyone. This medication helps a lot of people, not just VHL, it helps people who have kidney cancer, pancreatic cysts, brain tumours, and kidney tumours.

Hamish, WA

The diagnosis of a PNET has changed the way I look at life, and I am extremely grateful for the cutting edge research the oncologists bring to the table when treating the disease.

Patient Stories

Bronwyn, NSW

Chris, WA

Coko, NSW

Terri, VIC

Michael, QLD

Chris, VIC

Brad, VIC

Brian, ACT

Mary, Joyce and Mishy, QLD

Hamish, WA

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