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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John, VIC
- Large Bowel
Having two Primary NETs two years apart is incredibly rare. It highlights that there is still much to learn about this kind of cancer.
Judy, SA
- Unknown primary
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.
Karen, SA
- GEP-NET Other
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,
Kelly, WA
- Small Bowel
I had zero tolerance for alcohol … I had overwhelming fatigue.
Kim, QLD
- Unknown primary
When I was 16 years old (1990) I was quite sick and always tired, I was always vomiting. Eventually I was diagnosed with glandular fever, the doctors said it was very unusual to have the vomiting I had so they never looked for it.
Kim, TAS
- Unknown primary
The first thing I did was google NeuroEndocrine Cancer Australia and sign up to their newsletter. The NET nurse in Sydney emailed me in response asking if I wanted a phone call. I remember asking the NETs nurse – “how long have you got to talk with me?”. She talked with me for a long time. I was very scared and sad.
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.
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.
Lauren, Tas
- Large Bowel
My story shows the inequity patients living with neuroendocrine carcinoma. Cancer is cancer. It should not matter what type you have. Every patient deserves the same access to life-saving treatment.
Lyn, NSW
- Rectal
NETS has hugely impacted my life…going from a full and hectic life, of designing objects and exhibiting our art installation works and jewellery, everything had to stop so I could just focus one day at a time.
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.
Margaret, WA
- Small Bowel
I was diagnosed with NETS in May 2017, a biopsy of my ovary revealed the news. It was almost a relief to know why I was experiencing the symptoms I had been…
Mary, Joyce and Mishy, QLD
- Von Hippel-Lindau Syndrome (VHL)
Belzutifan. It is very expensive. What is the point of having the medication if no one can use it? We really want to get this (Belzutifan) accessible for everyone. This medication helps a lot of people, not just VHL, it helps people who have kidney cancer, pancreatic cysts, brain tumours, and kidney tumours.
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.
Melissa, VIC
- Large Bowel
I was diagnosed in 2011 at the age of 24, I can honestly say cancer had never entered my mind and it never seemed like something that could happen to me.
Michael, QLD
- Small Bowel
The Emergency Department completed scans and told me I had appendicitis. When they transferred me to another hospital for surgery, the doctors noticed a small lump in my bowel and investigated further. I was told I had cancer, and no other information was provided at that time.
