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.
Large Bowel Neuroendocrine Cancer
Overview
Colon Neuroendocrine Cancers are rare, can be large, aggressive, and have the potential to spread and cause bowel obstructions and bleeding. If the Neuroendocrine Cancer has spread to the liver, the person may have symptoms like wheezing, facial flushing and watery diarrhoea.
Patient Stories
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.
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.
Cassie, QLD
- Large Bowel
I’m a 36-year-old mum of three little humans – things like this just doesn’t happen to people like me. Until all of a sudden it does, and everything changes
Helen McDonald
- Large Bowel
It is impossible to explain to you in words how a person can be perfectly healthy one minute, then violently ill barely half an hour later, then admitted to Hospital within two. But that is exactly what happened to me…
John, VIC
- Large Bowel
Having two Primary NETs two years apart is incredibly rare. It highlights that there is still much to learn about this kind of cancer.
Lauren, Tas
- Large Bowel
My story shows the inequity patients living with neuroendocrine carcinoma. Cancer is cancer. It should not matter what type you have. Every patient deserves the same access to life-saving treatment.
Melissa Davis, VIC
- Large Bowel
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.
Helpful Resources
Fact Sheets
5HIAA
Causes & Risk Factors
Abdominal Pain in NETs
Booklets & Guides
About NETs
Booklets & Guides
Acronyms & Terminology for Neuroendocrine Cancer Patients
Causes & Risk Factors
Age and Gender as Risk Factors for NETs
Booklets & Guides
Associated Conditions
Clinical Trials
AUS-NET – Neuroendocrine Tumours
To improve patient quality of life and develop a cost-effective system that can be implemented across other rare cancers in the future.
Other Resources
Australian Patient Travel Subsidy Scheme
Booklets & Guides
Basic Testing sheet for GastroEnteroPancreatic (GEP) Neuroendocrine Tumors (NETs)
Getting Diagnosed
