Judy, SA

Name: Judy

NET Type:

  • Unknown primary

My story, stage 4 liver cancer and grade 3,

Length of Time it took to be Diagnosed – a couple of weeks

My NETs was found quite by accident. I had been on Ozempic for weight loss for about four months, and my GP was keeping a close eye on my blood work, as it can sometimes affect your organs. He noticed my liver function was a bit abnormal and suggested a CT scan. He thought it was probably just fatty liver, as three of my siblings have that, and I had no symptoms at all.

I went for the scan fully expecting that’s what it would be. Instead, 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.

I was referred to an oncologist who told me the prognosis wasn’t good. I was told I was terminal and that my only option was to start oral chemotherapy immediately. He even said that if I didn’t begin treatment, I probably wouldn’t be here in three weeks. That was in January 2025.

Since then, I’ve completed nine rounds of chemotherapy and I’m also on hormone treatment. I still don’t have any symptoms, and I haven’t had any side effects from the chemo. I feel no different now than I did before I was diagnosed.

I have been told I will need to stay on chemotherapy long-term, because if I stop, the tumours will eventually grow back. But I feel incredibly lucky that my GP, who I had only been seeing for less than a year, was so thorough and picked this up.

I have found the NECA very informative with relevant information about my disease and also the NET nurse team. It’s good to know I can get my answers to my questions as sometimes I feel I don’t get time at my oncology appointments.

Right now, I’m living well, with no symptoms, and continuing life much the same as before.

Share this article

More patients diagnosed with Unknown primary

Shirley, QLD

  • Unknown primary
I had my usual check, but I had not been feeling great, no energy, reduced appetite and I had lost weight. My abdomen was constantly distended and I realised I was burping a lot, something I never did much before.

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.

Walk, run, or ride this March4NETs!

For its third year, March4NETs will run throughout March 2026.

Get involved and support the 31,000 Australians living with neuroendocrine cancer.