Patient Stories

My journey started when I was in my early teens. At 14 my sister and myself were sent for genetic testing to see if we carried the MEN1 gene as my mother was told there was a 50/50 chance that this could have been passed onto us. Both my sister and I both inherited MEN1.

Although educating healthcare professionals and the general public about the disease is too late for me. I advocate for this to happen so that no future patient has to go through what has happened to me.

What I have learned is appropriate referral is so important. For me a partial diagnosis came 3 years after my 1st hypertensive crisis. Full diagnosis and treatment took another 4 years.

Having a family history of cancer, both mother and father, my own diagnosis of NETs probably shouldn’t have taken me by surprise but it did.

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. 

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.

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.

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