Patient Stories

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.

August 18th, 2008 is a day I will never forget. A day that will forever be burned into my mind. The day I first heard the words, “Sasha, it’s cancer.”

My neuroendocrine tumour (NET) story begins in the year 2000 when I was in my twenties. I was diagnosed with a low-grade pancreatic NET because I was having stomach pains. First off, the GP thought it was me being blocked up, but stomach pains persisted, and I had an ultrasound and then a CT scan that confirmed a pancreatic NET.

In August 2022 I was enjoying life, working as a PE Teacher, fit and healthy (I thought I was) when I visited my doctor for my yearly check-up.  The only complaint I had was some reflux and a little bloating.  He sent me for blood tests and added an ultrasound.  Two days later he delivered some news that would change the course of my family’s life.  I had a mass/tumour on the head of my pancreas

The specialist NECA NET Nurse was not only a sympathetic ear, but she was also practical and very efficient. Within weeks, she had secured me an appointment at Peter Mac, with Associate Professor Michael Michael, and for the first time in the many months since diagnosis, I felt heard, safe, and confident that my treatment was in the right hands.

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.

I had symptoms for over 5 years before receiving a diagnosis of metastatic pNET

Experiencing symptoms of fatigue, tiredness, and anxiety, I couldn’t ignore the significance of my condition, especially considering my family history.

Having two Primary NETs two years apart is incredibly rare. It highlights that there is still much to learn about this kind of cancer.

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…”