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Patient Stories

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

John, NSW

Friends and family look at me and say and think I must be cured as I look so well post lutate. It has taken some “character building” to understand from the start that I have inoperable cancer in terms of resolution.
View John, NSW's Story

Geoff Tomlin, TAS

I had symptoms for over 5 years before receiving a diagnosis of metastatic pNET
View Geoff Tomlin, TAS's Story

Rob, TAS

Experiencing symptoms of fatigue, tiredness, and anxiety, I couldn’t ignore the significance of my condition, especially considering my family history.
View Rob, TAS's Story

John, VIC

Having two Primary NETs two years apart is incredibly rare. It highlights that there is still much to learn about this kind of cancer.
View John, VIC's Story

Joe, QLD

I still remember asking the young girl doing the ultrasound “So what is that?” expecting her to say something like “Oh that’s your …”. But her more serious and cautious response was along the lines of “You will need to speak to your doctor…”
View Joe, QLD's Story

Greg, QLD

Video
Greg’s symptoms included tiredness, fatigue and diarrhoea.
View Greg, QLD's Story

Cathy, QLD

Video
Cathy’s symptoms were fatigue, diarrhoea and anxiety.
View Cathy, QLD's Story

Cindy, NSW

Video
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.
View Cindy, NSW's Story

Caitlin, TAS

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.
View Caitlin, TAS's Story

Wendy, Caloundra, QLD

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.
View Wendy, Caloundra, QLD's Story

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