My NETs Journey: Finding Answers and Support
In 2018, I experienced a year of “I don’t know what’s wrong with me, but something is up.” I could be sitting at a table and suddenly fall sound asleep. I was constantly exhausted, experiencing flushing, wheezing, and distinct bowel issues. The ongoing assumption was that I was simply going through menopause.
In October of that year, I developed what was thought to be a systemic infection and was sent to hospital. While scanning my kidneys, doctors found nothing concerning—except for a significant mass on the right side of my body. I should mention that I come from a small regional town with a base hospital approximately 15 km away.
The initial suspicion was bowel cancer. However, the on-call surgeon had seen a neuroendocrine tumour (NET) about 15 years earlier and thought my case could be NETs. A PET scan a week later confirmed the diagnosis.
I was admitted to Prince of Wales Hospital, where my mass and 13 lymph nodes were removed in November 2018. The medical team believed the surgical margins were clear and that all the cancer had been removed. When I visited my local oncology unit, they had never treated a NET patient before and felt they could offer no further treatment—so I simply carried on with life.
By May 2019, I began experiencing symptoms again (which I now recognised!). I reached out to NeuroEndocrine Cancer Australia’s one and only NET Nurse, who organised a referral to an oncologist at Royal North Shore Hospital. The moment I stepped through those doors, I finally felt heard, understood, and treated in a medical environment where NETs wasn’t a foreign entity.
New scans revealed metastases in my heart and pancreas.
The heart metastasis is inoperable, and the metastasis in my pancreas is stable for now, meaning I am under “watchful waiting.”
Since my NETs diagnosis, my overall health has rapidly declined. I have since been diagnosed with Sjogren’s syndrome (a form of lupus) and functional neurological disorder (FND), both of which impact my immune system. More recently, a non-NET-related mass was discovered in my thyroid, which is also under “watchful waiting.”
Despite these challenges, this disease has not stopped me in my tracks. I make the most of every day. I refuse to let the uncertainty of NETs control my life.
I have gotten married, travelled, and made incredible friends through the wonderful NETs community. I’ve learned that education is key and that building strong relationships with your healthcare team is essential for understanding your condition and making informed decisions about your treatment.
I encourage everyone to share their story—on the NeuroEndocrine Cancer Australia website and within their own communities—so that NETs is recognised and diagnosed earlier. I also encourage fundraising for NeuroEndocrine Cancer Australia if possible.
NeuroEndocrine Cancer Australia has been an invaluable source of support and information, providing expert guidance, patient resources, and a dedicated NET Nurse service.
As well as specialist NET Telehealth Nurses, Counsellor and Dietitian the NECA website offers:
✅ Comprehensive patient fact sheets and educational materials
✅ Access to NET specialist clinics and specialist NET medical professionals
✅ Information on clinical trials and the latest NET treatments
✅ Support groups and NET patient stories to connect with others on this journey
✅Private Facebook Groups for patients and carers so we always feel part of the community
✅ Advocacy guidance, ensuring NET patients have a voice in healthcare decisions
✅Free wallet cards for urgent Bathroom requirements and Carcinoid Crisis
I am incredibly grateful to NeuroEndocrine Cancer Australia. Their work makes a difference every day.
I have always believed in my favourite quote: “BE THE BEST VERSION OF YOURSELF.”
My best version is now a wonky 63 year old with NETs but I am rocking it with help of my family, friends and our NET community.
