Simone Leyden was changed forever by the loss of her sister Kate to a rare GI cancer. And ever since she has made sure that something good came of it – and it has. Simone co-founded the Unicorn Foundation with her brother Dr John Leyden, which seeks to raise awareness of NETs among the public and the medical profession. The Foundation is the only Australian not-for-profit dedicated solely to seeking a cure for neuroendocrine tumours (NETs) – currently affecting over 10,000 Australians, with 1800 new diagnoses a year.
The death of the Leydens’ sister Kate Carr was the trigger for the formation of Unicorn. Diagnosed in 2005 with rare pancreatic neuoroendocrine carcinoma, she fought a five-year battle before succumbing to the cancer in March 2010, aged just 34.
Simone says as Kate went through the process of consultation, diagnosis and treatment, “we saw a complete lack of resources available to patients. We felt an enormous need to bring together resources to provide more and better information.”
Simone and her brother discovered that less common cancers such as neuroendocrine tumours (NETs) are often overlooked by the health system; resulting in mortality of less common cancers double that of the common cancers such as breast or prostate. “If you develop an uncommon cancer such as NETs, you have only 40% chance of surviving five years, compared with 90% chance of surviving five years with breast cancer. These odds have not changed for decades” Simone said in a letter to the editor of the Cancer Forum earlier this year.
So, what do you need to know?
- NET cancer is an umbrella term for tumors of the neuroendocrine system, which often are not diagnosed until the patient has had symptoms for years. There is very little awareness of NET cancers and even less funding for research.
- We need to increase awareness about NET Cancer so here are a few facts to share: – 60-80% of patients are diagnosed with Net Cancer at advanced stage showing the need for symptom awareness
- Misdiagnosis is common. On average net cancer patients see 6 healthcare professionals over 12 visits before a correct diagnosis
- Symptoms of net cancer are often similar to more common conditions: IBS, asthma, diabetes – net cancer can arise throughout the body in organs that contain neuroendocrine cells such as the stomach, bowel and lungs
“Even though the number of patients diagnosed with RLC, including NET cancers, is on the rise, and collectively outnumber some common cancers, there is very little available from patient support through to new treatment options. It is therefore the role of consumer lead groups such as The Unicorn Foundation to drive funding for clinical trials, patient support, raising awareness within the medical community and general public, and advocating for access to new treatments.”
“We are constantly fighting for drugs to be included on the PBS for rare cancers, as well as funding clinical trials and trying to change the design of trials to help all cancer types. Personalised medicine in 2015 and beyond, means that not one size fits all, and our systems need to keep up.”
The Foundation was formed in 2009 and by 2011 Simone had become the Chief Executive Officer. Her background was in Advertising and Marketing but her passion lay with helping raise awareness of the cancer that took her sister.
In her role as CEO Simone advocates for greater access to treatments and diagnostics, raises funds for the NET Nurse Support Service and research, and raises awareness about NET cancers within the medical community and general public.
Simone is also mum of 2 children, and an active member of many associations including Cancer Drugs Alliance (CDA), steering committee member – Health Consumer Advocacy (HCA), communications subcommittee International Neuroendocrine Cancer Alliance (INCA), emerging economies Asia Pacific HTAi subcommittee and consumer advisory group to Private Health Care Australia.
Find out more about NETs by visiting The Unicorn Foundation.