I am a Patient, Cancer Charity Founder, Board Member, Patient Advocate, Wife & Mum
Welcome to Cancer Care Box. My name is Siobhan and I was born with a talent for growing neuroendocrine tumours. When I was 25 years old I was diagnosed with a hereditary cancer syndrome called M.E.N. Type 1 which was passed down to me from my father. He died from it when he was 44 and I was 3 years old at the time. Neuroendocrine tumours can start almost anywhere in the body but most often they start in the digestive system, including the pancreas, the reproductive system and lungs.
Over the years I have had numerous surgeries to remove parts of organs that were growing these tumours, and I will face more surgery and treatments in the future. I have learnt to live with this disease and this has given me a unique perspective on life.
Way back when I was first diagnosed (17+ years ago) and facing surgery, I really wanted to talk to other patients about their own experience. Out of frustration with the lack of support and information about this type of cancer I started and built up an organisation focused on helping patients with Neuroendocrine Cancers all around New Zealand.
It is called Unicorn Foundation New Zealand and it continues to be a thriving national charity. In 2015 we fundraised to establish a key type of diagnostic scan called a Gatate PET CT for the first time in New Zealand. This scan has also helped thousands of Prostate Cancer patients too. Over the past 7 years we lobbied government agencies to gain funding access for a key treatment called PRRT and after a lot of hard work this is now a permanent service available to all New Zealanders and is being delivered at Auckland Hospital. During that time we also set up a national support service for patients all over the country and we hold regular educational seminars. I am super proud of the progress we have made in a short amount of time. From my own experience of many years as a patient and also working in the health system, I will always remain passionate about helping other patients get support and the best possible outcomes.
Cancer is not like what they show in the movies, it is a marathon effort physically and mentally. Everyone deserves quality support around them regardless of what stage they are at, at the beginning and all the way throughout their journey.
One of the overarching goals of Cancer Care Box is to provide options and resources that will help to improve the mental health of cancer patients, regardless of the type or stage of cancer. Even for those patients who successfully get through all their treatment and are told they are in remission, they still face huge mental health challenges of working out what their 'new normal' is because life is never the same. You can’t fix what they are going through but if they know you are there for them, it will help immensely.
Cancer Care Box is here to make it easier for you
See below for links to the full news articles
Neuroendocrine Cancer Research Articles I have assisted with :Consensus-Derived Quality Performance Indicators for Neuroendocrine Tumour Care
Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals