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Home » Patient Stories » Judy, SA

Judy, SA

My story, stage 4 liver cancer and grade 3, diagnosed January 2025

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.

 

Patient Stories

Dan, VIC

I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

Karen, SA

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,

Roxanne, ACT

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.

Lauren, Tas

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.

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