Patient Stories Archive - Page 2 of 10 - NeuroEndocrine Cancer Australia

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.

Gwenda, QLD

In 2009 I was diagnosed with this challenge, PMP, I didn’t know if I would make it passed the ‘maybe five years’ that I was given if I had the surgery and ‘two years’ if I didn’t have it.

Amelia, QLD

Von Hippel-Lindau was explained. Genetic testing was sent to Western Australia. My mum Toni, 2 sisters and I all had VHL. I have two children, both Boys. They both have VHL, Belzutifan could change their future

Chris, NSW & LA

I hope that Belzutifan will be easily accessible in Australia soon because if it does not, it would mean that eventually, my family would have to permanently live in America so that my son Billy, who also has VHL, could take this medication as well when he would need it.