Auckland woman lives with the knowledge that she will grow cancerous tumours

Unicorn Foundation NZ executive Siobhan Conroy carries a genetic mutation which causes cancerous tumours to grow.
DANIELLE CLENT/STUFFUnicorn Foundation NZ executive Siobhan Conroy carries a genetic mutation which causes cancerous tumours to grow.

The central Auckland resident discovered at the age of 25 that she and her three brothers all inherited a genetic mutation that caused neuroendocrine cancer (NET cancer).

All four siblings inherited the gene from their father who died from the disease at the age of 44, when Conroy was just 3 years old.

“It’s a 50 per cent chance of inheriting each time and unfortunately all four of us inherited it which is quite unlucky,” Conroy said.

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The 40 year old had parathyroid tumours taken out of her neck when she was 25. As the glands regulate the amount of calcium and vitamin D throughout the body, she had one reimplanted in her forearm.

In 2010, she had her pancreas removed as another NET tumour was growing there. She had it taken out in the hope the cancer had not spread.

“It hadn’t so I’m so grateful that I did that because I might not be here if I hadn’t known,” Conroy said.

“That’s where I see my situation, I’m so lucky because who knows? I might not be alive now if that hadn’t of been taken out.”

She is the chief executive of Unicorn Foundation NZ, the only organisation in the country specifically for NET cancer patients.

Siobhan Conroy with her family not long after she had her pancreas removed in 2010.
SUPPLIEDSiobhan Conroy with her family not long after she had her pancreas removed in 2010.

“This one has been a forgotten cancer in a way,” Conroy said.

On average, it took about five years to diagnose the cancer and by the time the patient finds out what they are suffering from, they are angry, she said.

“They will be angry and upset and just frustrated because during that time, they would’ve been to their doctor several times.

“These are people who are actively trying to get help yet they are not being diagnosed with the thing that is actually causing the problems.”

NET cancer could arise in any part of the body, but was more common in the digestive system or lungs, she said.

Both Apple co-founder Steve Jobs and singer Aretha Franklin died from NET cancers.

Conroy said she started the foundation six years ago out of “frustration” that there was a lack of information available about the “quirky cancer”.

Siobhan Conroy's father Euen Ryan died at the age of 44 of NET cancer.
SUPPLIEDSiobhan Conroy’s father Euen Ryan died at the age of 44 of NET cancer.

She refuted the idea the cancer was rare as more than 2000 Kiwis lived with it and another was diagnosed every day.

But Conroy said it was a hard cancer to diagnose as there wasn’t just one test available.

The organisation celebrated NET Cancer Day on Saturday to raise awareness.

Conroy said the organisation was working with researchers to develop a blood test that would diagnose NET cancer.

Stuff