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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Michele, WA
- Paraganglioma
My surgery was a success. It went for 10 hours, they had previously predicted it could take up to 15 hours. I was in the ICU for 2 days then I was on ward for nearly 3 weeks. I went back to work on a part time basis after 6 weeks. In hindsight I should have given myself longer to heal.
Michelle, NSW
- Paraganglioma
What I have learned is appropriate referral is so important. For me a partial diagnosis came 3 years after my 1st hypertensive crisis. Full diagnosis and treatment took another 4 years.
Michelle, QLD
- Multiple Endocrine Neoplasia Type 1 (MEN1)|Pancreatic
Although feeling very disheartened at my future after diagnosis, something changed in the way I approached it as time has gone on. I decided that I was not going to be defined by this condition. It is a small part of me, I am NOT part of it.
Nat, SA
- Small Bowel
Before I was diagnosed, I had ongoing medical issues including bowel obstructions and endometriosis, which made it easy to dismiss my symptoms. But I started experiencing rashes across my chest, hot flushes, shortness of breath and heart palpitations. Something did not feel right.
Noreen, NSW
- Small Bowel
My diagnosis of Neuroendocrine Cancer came as a complete shock. I had been experiencing what the doctors called non-specific symptoms
Patricia, NSW
- Small Bowel
There’s such little awareness about this cancer, even among medical professionals. I’ve had GPs say to me, “I’ve never seen a neuroendocrine cancer patient in my life.” And I tell them, “You probably have — you just didn’t diagnose them.”
Paul, NSW
- Small Bowel
As soon as he woke his words were “they found something else”? He had been on the rounds with Doctor’s for years trying to find out what was wrong with his stomach.
Rachel, NSW
- Multiple Endocrine Neoplasia Type 1 (MEN1)|Pancreatic
I was diagnosed a long time ago with MEN1 which meant I was being monitored for a long time.
Rachel, QLD
- Small Bowel
NETs has totally changed my life. I was a bit of a gym junkie before and now have had to cancel my membership due to pain and fatigue. This has been the hardest thing to deal with.
Rob, TAS
- Pancreatic
Experiencing symptoms of fatigue, tiredness, and anxiety, I couldn’t ignore the significance of my condition, especially considering my family history.
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, WA
- 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.”
