DANIELLE CLENT / STUFF
Siobhan Conroy, NZ Head of the Unicorn Foundation, carries genetic mutation that causes tumor growth.
Siobhan Conroy develops tumors throughout her life – but she sees this information as a blessing.
The resident of Central Auckland found at age 25 that he and his three brothers inherited the genetic mutation that caused neuroendocrine cancer (NET cancer).
All four siblings inherit a gene from a father who died of a disease at the age of 44 when Conroy was only three years old.
"It's a 50 percent chance to charge every time, and unfortunately all four of us will inherit what's just unlucky," Conroy said.
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40-year-olds had parathyroid tumors that were removed from their neck at the age of 25. When glands controlled calcium and vitamin D throughout their body, he had one forearm replanted.
In 2010 he had your pancreas removed when another NET tumor grew there. He had the hope that the cancer had not spread.
"It was not so, I'm so grateful that I did it, because maybe I'm not here, if I had known," Conroy said.
"There I see my situation, I'm so lucky, because who knows? I might not be alive today if it had not been taken away."
He is the director of Unicorn Foundation NZ, which is the only organization in NET cancer patients.
"This has been forgotten in a cancerous way," Conroy said.
On average, cancer diagnosis lasted about five years and when the patient finds out what they suffer, they are storm, he said.
"They are angry and shocked and only frustrated, because during that time they would have been to their doctor several times.
"These are people who are actively trying to get help, but they have not been diagnosed with the thing that really causes problems."
NET cancer may occur in any part of the body, but it was more common in the digestive tract or in the lungs, he said.
Both Apple founder Steve Jobs and singer Aretha Franklin died of NET cancer.
Conroy said he started the Foundation six years ago with "frustration" about the "silly cancer" being unavailable.
He overturned the idea that cancer was rare when over 2,000 Kiwis lived with it and another diagnosed it every day.
But Conroy said it was difficult to diagnose cancer because it was not just one test.
The organization celebrated the NET cancer day on Saturday to raise awareness.
Conroy said the organization worked with scientists to develop a blood test that diagnosed NET cancer.