Patient Stories

Read more about the experiences of fellow NET patients and also check out our Patient Stories videos on Youtube.

I have fully recovered from the surgery recovering and feeling terrific, and I hardly think about my NET. I am extremely grateful for the early diagnosis, that Australia invests in free bowel screening tests, and that we have excellent medical staff, facilities and treatments. I’m the happiest I have ever been in my life.
Through attending NET meetings at FSH I was made more aware of NETS and found friendship and understanding from all who attended plus I had found a ‘home’ where others understood. 
Contact Neuroendocrine Cancer Australia – my Go-To Place for detailed, factual, accessible information about Neuroendocrine Cancer – and for information to pass on to family and to medical professionals.
I have Neuroendocrine cancer. No one should feel alone and this is my #CancerKindness story.
After almost 5 years of misdiagnoses, Kristen was diagnosed with NETs at only 43 years of age. Kristen’s initial diagnosis was grim, thankfully a second opinion and access to PRRT treatment successfully reduced her tumour and gave Kristen a second chance at life.
On the 8th of October 2019 I found out I was expecting my second child. Less than two weeks later I was rushed in for emergency surgery for appendicitis. Two weeks after the surgery I was diagnosed with a NET inside my removed appendix
The more I read and understood about PRRT I just kept thinking why aren’t I receiving this treatment? I have inoperable and incurable NETs so I wanted something to give me hope.
When I got diagnosed with NETs it literally flipped my world upside down. I went from doing volunteer work, playing football, working 6 days a week and playing on my cars.
I was diagnosed in 2011 at the age of 24, I can honestly say cancer had never entered my mind and it never seemed like something that could happen to me.
My diagnosis of Neuroendocrine Cancer came as a complete shock.  I had been experiencing what the doctors called non-specific symptoms
I was diagnosed a long time ago with MEN1 which meant I was being monitored for a long time.
I was diagnosed with NETS in May 2017, a biopsy of my ovary revealed the news. It was almost a relief to know why I was experiencing the symptoms I had been…
I was diagnosed with high grade neuroendocrine carcinoma the Friday before Christmas. My prognosis was 6 months.
My role change from working life to a carer was rapid and willingly undertaken even though it was not what I had in mind for our future lives.
Although I think I’d been unwell for a while I don’t think I spent as long on the diagnosis path as some others with NETs.
It's almost two years now since I was given the diagnosis of Neuroendocrine cancer
I went from being monitored for MEN1 from the age of 12 so was used to blood tests and scans and seeing specialists but routinely rather than rushed or just told to do something without much explanation.
When I was 16 years old (1990) I was quite sick and always tired, I was always vomiting. Eventually I was diagnosed with glandular fever, the doctors said it was very unusual to have the vomiting I had so they never looked for it.
Cancer stole our Mum’s right to see her children get married, to meet her grandchildren and to grow old with her husband.
Like so many others, it took 2 years from my first scans showing tumours to be diagnosed with NETS. It was long, frustrating and physically and emotionally draining not only on me, but also my family.