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

Coko, NSW

I have four beautiful daughters, I’m a solo mum, they are my favourite part of life. I’ve been diagnosed with Neuroendocrine Cancer stage 4. I remember feeling a lump on my hard pallet, I remember the moment the Dr said “I’m really sorry, but it’s cancerous”.

Terri, VIC

I know that if there was more understanding of the disease and its effects my experience wouldn’t have been so isolating. The lack of knowledge within the medical profession was really shocking to me, as was the lack of information and support offered after diagnosis.

Michael, QLD

The Emergency Department completed scans and told me I had appendicitis. When they transferred me to another hospital for surgery, the doctors noticed a small lump in my bowel and investigated further. I was told I had cancer, and no other information was provided at that time.

Chris, VIC

Looking back over the last few years the symptoms were always there but life gets in the way and you dismiss them.
To say I was in shock was an understatement. I was numb. I’m 42 years old with 2 children and a wife and family, I can’t get cancer.