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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Alison Danis
- Gastric
My name is Ali and I live in rural/remote SA. Surgeons discovered I had NETs when they were operating on my re-occurring bowel cancer in 2017. A PET scan followed and they found an inoperable NET tumour in my small bowel (primary is unknown).
Allison, W.A.
- Small Bowel
This experience has made me a firm believer in screening, early diagnosis, and specialist NET care. I feel incredibly lucky — and grateful — that my NET was found at such an early, treatable stage.
Amanda Massey, QLD
- Pancreatic
Honestly, pre-NETs now seems like another life for me. Â The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.
Amanda, QLD
- Appendix
For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.
Amelia, QLD
- Pancreatic|Pheochromocytoma|Von Hippel-Lindau Syndrome (VHL)
Von Hippel-Lindau was explained. Genetic testing was sent to Western Australia. My mum Toni, 2 sisters and I all had VHL. I have two children, both Boys. They both have VHL, Belzutifan could change their future
Amy, NSW
- Large Bowel
I was diagnosed with NEC high grade small cell neuroendocrine carcinoma in a duplication cyst of my colon. I was born with a duplicate colon I never knew about and my cancer was found within it.
Angela, ACT
- Pheochromocytoma
My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance.
Ann, VIC
- Pancreatic
If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.
Ashley, W.A.
- Pancreatic|Von Hippel-Lindau Syndrome (VHL)
I was diagnosed with Von Hippel-Lindau Syndrome (VHL) in 2016, I am classified as de novo or a mosaic as I am the first in my line having VHL, both of my parents have been tested and neither have the mutation in the Chromosome 3p25.3.
Birgitte, South Australia
- Large Bowel
I have fully recovered from the surgery and I’m feeling terrific, and I hardly think about my NET. I am extremely grateful for the early diagnosis.
Bob, Culburra Beach, NSW
- Small Bowel
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.
Brad, VIC
- Small Bowel
I went and got the diagnosis alone. Probably not a good idea. You hear the first words, ‘You’ve got cancer’ and then you don’t hear another word after that.
Brad, WA
- Pancreatic
4-6 months before diagnosis I was losing a lot of weight…I was on a holiday in Hawaii and I just couldn’t stomach any food
Bree, NSW
- Large Bowel
About a week or so after Zara was born and Bree was at home, she found herself on the shower floor in pain and new she needed to return to the hospital for answers.
Brian, ACT
- Unknown primary
Brian had really no clear symptoms (of Neuroendocrine Cancer) and if he hadn’t complained about a sore arm I am not sure what would have happened.
Bronwyn, NSW
- Small Bowel
I encourage everyone to share their story—on the NeuroEndocrine Cancer Australia website and within their own communities—so that NETs is recognised and diagnosed earlier. I also encourage fundraising for NeuroEndocrine Cancer Australia if possible.
