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Home » Patient Stories » Cindy, NSW

Cindy, NSW

Cindy’s family has a strong history of neuroendocrine cancer. 

Cindy’s sister was 24 when she got diagnosed with gastrointestinal stromal tumor (GIST) and had surgery to remove a tumor from her abdomen but sadly passed away a few years later from a GIST. 

Two years after the death of Cindy’s sister, her mum was diagnosed with secondary liver cancer and received surgery and chemo but passed away six months later. 

After the death of her mother, her 20-year-old son found a large lump on his abdomen which turned out to be a tumour the size of a small football. 

It was after the diagnosis of her son, that Cindy decided to get genetic testing which showed that she carried the SDHB gene. This prompted her wider family to get checked which highlighted that her two daughters were also carriers.

Watch the full video here. 

Patient Stories

Patricia, NSW

There’s such little awareness about this cancer, even among medical professionals. I’ve had GPs say to me, “I’ve never seen a neuroendocrine cancer patient in my life.” And I tell them, “You probably have — you just didn’t diagnose them.”

Jo, QLD

In that moment, everything just crumbled. One minute, I was thinking I’d be home in a day or two. The next, I was being told I had stage-four, inoperable cancer.

Bronwyn, NSW

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.

Chris, WA

I have worked in healthcare my entire life I had never heard of NETs until my diagnosis and I’m pretty sure none of the doctors I had seen in the lead up to diagnosis knew about it either.

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