Amy, NSW

Diagnosis: Small cell high grade neuroendocrine carcinoma
Diagnosed: 22/10/2020
Time to diagnosis: 3yrs

I have a different story. 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.

I had 2 weeks of excruciating pain. In the years prior to this pain I had symptoms of irritable bowel syndrome and terrible back pain. I was 32yrs old when diagnosed.

A doctor sent me for an ultrasound and the technician took a 2 second look and said “We are getting a CT scan”.

I had that scan and then they sent me for a lung CT. They found a 13cm mass. I was in so much pain I went to the ER that night and begged for morphine. I found out on a Thursday and the next Thursday I had surgery. They removed my right kidney, gallbladder, appendix, resected bowel and duodenum with the mass.

I now have a 30cm scar down my torso. It saved my life. 4 rounds of chemotherapy and 3yrs later I am still here and NED (no evidence of disease).

Patient Stories

Dan, VIC

I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

Karen, SA

My days and months have been spending time and money on and in medical appointments, tests and scans, rooms, clinics and medications and listening to profoundly specialised medical jargon, which is not always explained fully and sometimes assumed to be common knowledge,

Roxanne, ACT

The hardest thing has been actually finding out what was wrong with me. No-one could tell me for months and the toll it took on me and my family was devastating. The lack of knowledge of NETs amongst the medical fraternity amazed me. Still a long way to go.

Judy, SA

The results showed 15 tumours in my liver. Within days I had a biopsy, which confirmed it was a neuroendocrine tumour. I had never heard of this type of cancer prior to being diagnosed.