Brian, ACT
- Unknown primary
Brian had really no clear symptoms (of Neuroendocrine Cancer) and if he hadn’t complained about a sore arm I am not sure what would have happened.
Name: Judy
NET Type:
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.
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