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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Ros, TAS
- Paraganglioma
After testing positive for SDHB the rest of my family, including a large extended family, were tested. 75% of my (extended) family members tested are positive for SDHB, which is around 25 people.
Roxanne, ACT
- Bronchopulmonary NET - Typical carcinoid
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.
Ruth Else
- Bronchopulmonary NET - Typical carcinoid
The year was 1999 and I was very, very sick. I weighed just 45kgs, had no energy and struggled to breathe. I was flown to Perth from the North West with a provisional diagnosis of TB. I didn’t know what was wrong with me, just that something was trying to kill me.
Ryan, NSW
- Von Hippel-Lindau Syndrome (VHL)
I urge the Australian Government to place Belzutifan on the PBS. If we can minimise the tumour growth, if not reduce the size, that then reduces the chances of needing surgeries and that reduces the impacts of potentially more disabilities. I’m pretty stuffed as it is. I don’t really want to get any more.
Sandi, NSW
- Small Bowel
Being told you have an incurable cancer is a big moment to process… My symptoms were quite acute and they had a very sudden onset. Abdominal pain, cramping, vomiting, sweating
Sasha, VIC
- Adrenocortical carcinoma
August 18th, 2008 is a day I will never forget. A day that will forever be burned into my mind. The day I first heard the words, “Sasha, it’s cancer.”
Sharon Rickard, VIC
- Small Bowel
Although I think I’d been unwell for a while I don’t think I spent as long on the diagnosis path as some others with NETs.
Shirley, QLD
- Unknown primary
I had my usual check, but I had not been feeling great, no energy, reduced appetite and I had lost weight. My abdomen was constantly distended and I realised I was burping a lot, something I never did much before.
Simon, VIC
- Von Hippel-Lindau Syndrome (VHL)
We need greater awareness of VHL, better education for healthcare professionals, and up-to-date resources to guide patients through diagnosis and care.
Steven, TAS
- Pancreatic
When I finally found NECA – I finally had accurate up the minute information – we could breathe. The relief was palpable. Knowing there was something and someone there to support us – we had someone on the other end of the phone. We were greeted with kindness, knowledge and a sympathetic ear, there were so many resources that we could watch and download as well as support groups to join.
Suzanne Stewart, N.T.
- Pancreatic
I was first diagnosed with NET’s in October 2010 after the discovery of a mass in my pancreas. I had been unwell and lived with symptoms for about 4 years and for a while I actually thought that I might have ovarian cancer as the symptoms were very similar (according to the adverts on TV).
Suzie, NSW
- Small Bowel
Looking back, I had lower right pain (in my body) for two years prior… I just knew something didn’t add up
Tayla Barreau, SA
- Paraganglioma
Our eldest daughter Tayla had an ultrasound, MRI and CAT scan just days before, all which detected a mass in her abdomen, this warranted further investigation by the hospital. Even more bizarre was the fact that she had found this lump herself.
Terri, VIC
- Pancreatic
I know that if there was more understanding of the disease and its effects my experience wouldn’t have been so isolating. The lack of knowledge within the medical profession was really shocking to me, as was the lack of information and support offered after diagnosis.
Tracey, WA
- Pancreatic
My neuroendocrine tumour (NET) story begins in the year 2000 when I was in my twenties.
I was diagnosed with a low-grade pancreatic NET because I was having stomach pains. First off, the GP thought it was me being blocked up, but stomach pains persisted, and I had an ultrasound and then a CT scan that confirmed a pancreatic NET.
Vanessa, ACT
- Von Hippel-Lindau Syndrome (VHL)
I was in my late twenties when I first realised something wasn’t right. I began experiencing numbness in my back, and after months of tests and uncertainty, doctors discovered a cluster of tumours in my spine. That’s when I was diagnosed with VHL.
