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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Brydie’s Story
- Paraganglioma
Up until the 23 May 2013, I was your typical working woman juggling home life and a career as a Lieutenant in the Royal Australian Navy.
Caitlin, TAS
- Multiple Endocrine Neoplasia Type 1 (MEN1)
- Pancreatic
My journey started when I was in my early teens. At 14 my sister and myself were sent for genetic testing to see if we carried the MEN1 gene as my mother was told there was a 50/50 chance that this could have been passed onto us. Both my sister and I both inherited MEN1.
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
Catherine Sutton, NSW
- Pheochromocytoma
For years I had felt unwell and not my normal self. I was a confident, happy go-getter who had become tired, anxious and nervous without cause and ultimately developed an extra short fuse.
Catherine, TAS
- GEP-NET
I had been feeling unwell for some time but nothing specific, a bit nauseous, a lot of flushing (which I thought was probably something to do with menopause) and diarrhoea.  I presented the Doctor with a diary of my week with details of my severe diarrhoea which had worsened about July.  Her response was but that is only a week, and I said that is what every week is like.Â
Cathy, QLD
- Unknown primary
Cathy’s symptoms were fatigue, diarrhoea and anxiety.
Chris, NSW & LA
- Von Hippel-Lindau Syndrome (VHL)
I hope that Belzutifan will be easily accessible in Australia soon because if it does not, it would mean that eventually, my family would have to permanently live in America so that my son Billy, who also has VHL, could take this medication as well when he would need it.Â
Chris, VIC
- Pancreatic
Looking back over the last few years the symptoms were always there but life gets in the way and you dismiss them.
To say I was in shock was an understatement. I was numb. I’m 42 years old with 2 children and a wife and family, I can’t get cancer.
Chris, WA
- Small Bowel
I have worked in healthcare my entire life I had never heard of NETs until my diagnosis and I’m pretty sure none of the doctors I had seen in the lead up to diagnosis knew about it either.
Cindy, NSW
- SDHD/SDHB/SDHC
My journey started when I was in my early teens. At 14 my sister and myself were sent for genetic testing to see if we carried the MEN1 gene as my mother was told there was a 50/50 chance that this could have been passed onto us. Both my sister and I both inherited MEN1.
Coko, NSW
- Head & Neck
I have four beautiful daughters, I’m a solo mum, they are my favourite part of life. I’ve been diagnosed with Neuroendocrine Cancer stage 4. I remember feeling a lump on my hard pallet, I remember the moment the Dr said “I’m really sorry, but it’s cancerous”.
Dan, VIC
- Gastric
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.
David Lockwood, NSW
- Pancreatic
I have the same cancer that singer, and queen of soul, Aretha Franklin and Apple CEO, Steve Jobs had, neuroendocrine cancer (NETs).
Dee, QLD
- Pheochromocytoma
They found my original tumour incidentally. I had absolutely no awareness that I was walking around with a rare tumour inside and that I was essentially like a ticking time bomb. I went for a routine CT scan due to some lower leg pain and vaginal bleeding. Having previously undergone a hysterectomy, a CT scan was scheduled to determine the cause of any issues. Abdominal adenoma was the original diagnosis, and a follow up scan was suggested. It was this second CT scan that would change my world entirely.
Demi, WA
- Appendix
On the 8th of October 2019 I found out I was expecting my second child. Less than two weeks later I was rushed in for emergency surgery for appendicitis. Two weeks after the surgery I was diagnosed with a NET inside my removed appendix
Denae, SA
- Small Bowel
The NECA NET Nurse gave me so much support and information. The phone support wasn’t rushed like medical appointments, the resources that she emailed me were full of useful information that I could share with my family. I feel better equipped to advocate for myself now. I don’t feel so alone anymore.
