Patient Stories

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.

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

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. 

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.

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.

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. 

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.