Dianna, NSW

I was diagnosed on 27 May 1983, when I had a carcinoid tumour of the foregut type removed from the ampulla of Vater, after years of being told, since childhood, that my constant stomach complaints were just “neurotic hypochondria.” The tumour was fully excised, and I got on with life, quite enthusiastically in fact. Not long after my operation, I found myself dancing on a bar on New Year’s Eve, making up for lost time!

Then, on 14 August 2007, I was walking down the street when my leg simply gave out from under me. Scans revealed multiple bony metastases, and so began another long round of treatment. I had radiotherapy to my pelvis, followed by three cycles of Lutate combined with chemotherapy in 2013. Further pelvic radiotherapy followed in 2014, and between 2017 and 2018 I had additional cycles of Lutate combined with another medication, with the dose adjusted along the way due to skin problems.

At the time of my original diagnosis, almost no one knew about carcinoid tumours, and there was little anyone could offer me. I did my own research and eventually found a doctor in Belgium who pointed me toward a NET specialist in Melbourne from Peter MacCallum. I was fortunate enough to get onto one of his clinical trials.

These days, I take additional medication only if needed – if I have a flare up of symptoms such as pain or diarrhoea. Once every six weeks I have a sub-cut injection for my bone mets to prevent fractures.

I won’t pretend it’s always easy. After 43 years, there’s still a feeling that this could come back at any time, and every ache or pain can bring a moment of worry. A lot of my time is taken up with medical appointments, and I know that’s something many other NET patients will understand well.

I’ve been told that Australian Institute of Health and Welfare records only capture diagnoses from 1985 onwards. I’ve had neuroendocrine cancer for so long that I’m honestly not sure if I’m even included in the more than 31,000 other Australians living with this disease.

For anyone newly diagnosed, I hope that knowing I’ve been living with this for over 43 years brings you some hope. It’s not all bad news. Many NET patients go on to live long lives, and we make the very best of them.

If there’s one thing I’ve learned, it’s that patients need to trust their own instincts, and not rely on doctors alone.