Patient Stories

About a week or so after Zara was born and Bree was at home, she found herself on the shower floor in pain and new she needed to return to the hospital for answers.

My surgery was a success. It went for 10 hours, they had previously predicted it could take up to 15 hours. I was in the ICU for 2 days then I was on ward for nearly 3 weeks. I went back to work on a part time basis after 6 weeks. In hindsight I should have given myself longer to heal.

I was diagnosed with NEC high grade small cell neuroendocrine carcinoma in a duplication cyst of my colon. I was born with a duplicate colon I never knew about and my cancer was found within it.

After testing positive for SDHB the rest of my family, including a large extended family, were tested. 75% of my (extended) family members tested are positive for SDHB, which is around 25 people.

As soon as he woke his words were “they found something else”? He had been on the rounds with Doctor’s for years trying to find out what was wrong with his stomach.

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.