Patient Stories

I had my usual check, but I had not been feeling great, no energy, reduced appetite and I had lost weight. My abdomen was constantly distended and I realised I was burping a lot, something I never did much before.

I was diagnosed with Von Hippel-Lindau Syndrome (VHL) in 2016, I am classified as de novo or a mosaic as I am the first in my line having VHL, both of my parents have been tested and neither have the mutation in the Chromosome 3p25.3.

The first thing I did was google NeuroEndocrine Cancer Australia and sign up to their newsletter. The NET nurse in Sydney emailed me in response asking if I wanted a phone call. I remember asking the NETs nurse – “how long have you got to talk with me?”. She talked with me for a long time. I was very scared and sad.

Share your story, you never know what you may learn, or what a difference you can make in someone else’s day. Above all be kind to yourself.

My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance.

I had been feeling unwell for some time but nothing specific, a bit nauseous, a lot of flushing (which I thought was probably something to do with menopause) and diarrhoea.  I presented the Doctor with a diary of my week with details of my severe diarrhoea which had worsened about July.   Her response was but that is only a week, and I said that is what every week is like. 

The Doctor mentioned I should start studying as he was very confident of what the diagnosis would be and told me it was very rare and many doctors would not understand or would not have seen it. This was the best advice I ever received.

The NECA NET Nurse gave me so much support and information. The phone support wasn’t rushed like medical appointments, the resources that she emailed me were full of useful information that I could share with my family. I feel better equipped to advocate for myself now. I don’t feel so alone anymore.

Although feeling very disheartened at my future after diagnosis, something changed in the way I approached it as time has gone on. I decided that I was not going to be defined by this condition. It is a small part of me, I am NOT part of it.