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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Amanda M, QLD
- Pancreatic
Honestly, pre-NETs now seems like another life for me. The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.
Ann, VIC
- Pancreatic
If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.
Brad, WA
- Pancreatic
4-6 months before diagnosis I was losing a lot of weight…I was on a holiday in Hawaii and I just couldn’t stomach any food
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.
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.
Denzil, ACT
- Pancreatic
In August 2022 I was enjoying life, working as a PE Teacher, fit and healthy (I thought I was) when I visited my doctor for my yearly check-up. The only complaint I had was some reflux and a little bloating. He sent me for blood tests and added an ultrasound. Two days later he delivered some news that would change the course of my family’s life. I had a mass/tumour on the head of my pancreas
Geoff, TAS
- Pancreatic
I had symptoms for over 5 years before receiving a diagnosis of metastatic pNET
Hamish, WA
- Pancreatic
The diagnosis of a PNET has changed the way I look at life, and I am extremely grateful for the cutting edge research the oncologists bring to the table when treating the disease.
Jan, NSW
- Pancreatic
My diagnosis with a pancreatic neuroendocrine when I was 36 was out of nowhere… More recently my auntie has been diagnosed, and family discussion have identified a distant cousin as well. This has now had a larger impact on not only myself but my larger family, and made us more aware of our health.
Jessica, WA
- GEP-NET
- Pancreatic
Living in Kalgoorlie meant I needed to travel to Perth for further testing and specialist care. I underwent brushings to help confirm the diagnosis and had stents placed in my pancreas and bile duct, as both were not functioning well. When the brushings were unable to provide a clear diagnosis, a biopsy was performed to officially confirm the NET.
Jo, QLD
- Pancreatic
In that moment, everything just crumbled. One minute, I was thinking I’d be home in a day or two. The next, I was being told I had stage-four, inoperable cancer.
John, NSW
- Pancreatic
Friends and family look at me and say and think I must be cured as I look so well post lutate. It has taken some “character building” to understand from the start that I have inoperable cancer in terms of resolution.
Kristen, VIC
- Pancreatic
After almost 5 years of misdiagnoses, Kristen was diagnosed with NETs at only 43 years of age. Kristen’s initial diagnosis was grim, thankfully a second opinion and access to PRRT treatment successfully reduced her tumour and gave Kristen a second chance at life.
Lynda, ACT
- Pancreatic
Like so many others, it took 2 years from my first scans showing tumours to be diagnosed with NETS. It was long, frustrating and physically and emotionally draining not only on me, but also my family.
Mel, WA
- Pancreatic
They found a tumour about the size of a tennis ball on my pancreas… It’s a shame that it takes a diagnosis like this to change the way people live their life.
Rob, TAS
- Pancreatic
Experiencing symptoms of fatigue, tiredness, and anxiety, I couldn’t ignore the significance of my condition, especially considering my family history.
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