Patient Stories Archive - Page 3 of 10 - NeuroEndocrine Cancer Australia

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.

Ryan, NSW

I urge the Australian Government to place Belzutifan on the PBS. If we can minimise the tumour growth, if not reduce the size, that then reduces the chances of needing surgeries and that reduces the impacts of potentially more disabilities. I’m pretty stuffed as it is. I don’t really want to get any more.

Ann, VIC

If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.

Steven, TAS

When I finally found NECA – I finally had accurate up the minute information – we could breathe. The relief was palpable. Knowing there was something and someone there to support us – we had someone on the other end of the phone. We were greeted with kindness, knowledge and a sympathetic ear, there were so many resources that we could watch and download as well as support groups to join.

Jacqueline, NSW

When I think about symptoms to diagnosis, it was probably about 7 years.

Jeffrey, VIC

At age 75, I remain in perfect health and have no symptoms from the disease or treatment. I maintain an active lifestyle and walk 10 kms most days, as well as cycle, swim, kayak and maintain my house and garden. I eat an anti-inflammatory diet and keep my weight in trim.