Multiple Endocrine Neoplasia Type

I was three years old when my father died from neuroendocrine cancer, and he was just 44. He had spent most of his adult life with serious health issues that related to his cancer but he was never properly diagnosed until the very end. When he died, my poor mother was left with four children to raise on her own – with me (the most difficult!) as her youngest.

I was 25 years old when we discovered that my father’s cancer was caused by a hereditary gene called Multiple Endocrine Neoplasia Type 1 or MEN1, which has a 50% chance of being passed on to each child. So my three older brothers and I were all tested with the results confirming that we all inherited the same disease. While my own children have been lucky to escape this disease, several of my brother’s children have also inherited it. This means over our lifetimes, we too will grow neuroendocrine tumours, and no one can tell us exactly where or when they will grow. I have had several surgeries to remove tumours, including pancreatic surgery where they had to take 12 cm of my pancreas.

I am happy to report that I am currently tumour/cancer free.

Every 6 months I have tests to check for new tumour growth but I unlike other hereditary cancers, I can’t have organs removed to prevent cancer starting. All that I can do is help to try and catch them early. I am so lucky to be given the gift of knowing I have this disease as this gives me the best chance of being around to watch my children grow up. For this reason, I decided to establish Unicorn Foundation NZ as a registered charity in 2013, and I am determined to help improve the lives of anyone affected by NET Cancer.

We have a huge amount lot of work to do to create awareness and bring the right treatment here to New Zealand. Firstly we desperately need the specialised NET scan so our doctors can accurately diagnose patients and have a clearer picture on the best way to treat each individual patient. The NET scan is currently only available to patients who can personally cover the cost of frequent travel to Melbourne and the cost of the scan – there is no government funding. We hope to raise enough money to establish the NET Scan here in NZ and also cover the cost for patients over the next two years. Beyond this our hope is that the government will see the value and step in.

It is so important that we come together to facilitate change. Please join us to help spread awareness about this disease and create change here in New Zealand.