Patient Stories
Every neuroendocrine cancer story is unique.
Here, people with neuroendocrine cancer and their families have shared their personal stories, offering insight, strength and hope to others navigating life with neuroendocrine cancer. Through sharing these experiences the importance of awareness is highlighted, along with the need for early diagnosis, the importance of understanding the disease, advocacy and enabling support throughout every stage of the neuroendocrine cancer diagnosis.
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Denzil, ACT
- Pancreatic
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
Doreen, WA
- Small Bowel
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.
Geoff, TAS
- Pancreatic
I had symptoms for over 5 years before receiving a diagnosis of metastatic pNET
Grant, NSW
- Multiple Endocrine Neoplasia Type 1 (MEN1)|Pancreatic
Grant Mundell Being diagnosed with a pNET and MEN1 has had a huge impact on my life and that of my
Greg, QLD
- Small Bowel
Greg’s symptoms included tiredness, fatigue and diarrhoea.
Gwenda, QLD
- Appendix
In 2009 I was diagnosed with this challenge, PMP, I didn’t know if I would make it passed the ‘maybe five years’ that I was given if I had the surgery and ‘two years’ if I didn’t have it.
Hamish, WA
- Pancreatic
The diagnosis of a PNET has changed the way I look at life, and I am extremely grateful for the cutting edge research the oncologists bring to the table when treating the disease.
Jackie, NSW
- Small Bowel
I had an ultrasound for an unrelated medical condition. The radiographer identified a differential diagnosis… a neuroendocrine tumour (NETs).
Jacqueline, NSW
- Small Bowel
When I think about symptoms to diagnosis, it was probably about 7 years.
Jamie, SA
- Small Bowel
In 2010 when Jamie was only 32 years old, with a 6-month-old baby at home and the world at her feet, she was diagnosed with a mid-gut neuroendocrine tumour (NET).
Jan, NSW
- Pancreatic
My diagnosis with a pancreatic neuroendocrine when I was 36 was out of nowhere… More recently my auntie has been diagnosed, and family discussion have identified a distant cousin as well. This has now had a larger impact on not only myself but my larger family, and made us more aware of our health.
Jeffrey, VIC
- Small Bowel
At age 75, I remain in perfect health and have no symptoms from the disease or treatment. I maintain an active lifestyle and walk 10 kms most days, as well as cycle, swim, kayak and maintain my house and garden. I eat an anti-inflammatory diet and keep my weight in trim.
Jessica, WA
- GEP-NET
- Pancreatic
Living in Kalgoorlie meant I needed to travel to Perth for further testing and specialist care. I underwent brushings to help confirm the diagnosis and had stents placed in my pancreas and bile duct, as both were not functioning well. When the brushings were unable to provide a clear diagnosis, a biopsy was performed to officially confirm the NET.
Jo, QLD
- Pancreatic
In that moment, everything just crumbled. One minute, I was thinking I’d be home in a day or two. The next, I was being told I had stage-four, inoperable cancer.
Joe, QLD
- Pheochromocytoma
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…”
John, NSW
- Pancreatic
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.
