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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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.
Joe, QLD
- Pheochromocytoma
I still remember asking the young girl doing the ultrasound “So what is that?” expecting her to say something like “Oh that’s your …”. But her more serious and cautious response was along the lines of “You will need to speak to your doctor…”
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.
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, W.A.
- Small Bowel
I had zero tolerance for alcohol … I had overwhelming fatigue.
Kim McLean, 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 Leknius, 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
- Pancreatic|Von Hippel-Lindau Syndrome (VHL)
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.
Linda, TAS & NSW
- Small Bowel
The Doctor mentioned I should start studying as he was very confident of what the diagnosis would be and told me it was very rare and many doctors would not understand or would not have seen it. This was the best advice I ever received.
Lyn Balzer, 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 Dunstone, 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 Powell, 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…
