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Home » Patient Stories » Amy, NSW

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

Allison, W.A.

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.

Cassie, QLD

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

Lana, NSW

Blurry vision had led to a diagnosis of Von Hippel-Lindau (VHL) disease – a condition where multiple tumours grow in various parts of the body, including the brain, spinal cord, abdominal organs, and eyes.

Simon, VIC

We need greater awareness of VHL, better education for healthcare professionals, and up-to-date resources to guide patients through diagnosis and care.

View All

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