Research confirms over 60% of neuroendocrine (NET) cancer patients are Stage 4 when diagnosed

November 10 marks World NET Cancer Day, an annual event designed to raise awareness of neuroendocrine (NET) cancers around the world. This is the cancer that both Apple founder, Steve Jobs and Queen of Soul, Aretha Franklin died of, yet still little is known about the disease.

The Unicorn Foundation, Australia’s only charity providing support to Australian’s living with neuroendocrine cancers, will be working with cafes throughout Australia to increase awareness about this often-misdiagnosed form of cancer.

In conjunction with this year’s event, the highly esteemed International Journal of Cancer has published an article highlighting the disproportionate level of unmet needs found in neuroendocrine (NET) patients from the perspective of patients, patient advocates and healthcare professionals (HCPs).

The article titled “Unmet needs in the global neuroendocrine tumors (NETs) community” highlights several important unmet needs ofpatients. Research conducted found that less than 25% of NET patients felt that their needs for more information was met at diagnosis. 

Furthermore, over 60% of NETs are Stage 4 by the time patients are correctly diagnosed and for many the cancer has spread, so life expectancy can be drastically reduced. Increased awareness is required amongst HCP’s to facilitate faster recognition, diagnosis and referral for patients.

Simone Leyden, CEO of Unicorn Foundation and President of the International Neuroendocrine Cancer Alliance (INCA) says, “The study revealed that only 25% of NET cancer patients felt that their informational needs were met at diagnosis, when you compare this to the 80% of breast cancer survivors who report satisfaction with the level of information they receive, you really start to see just how big the information gap is. We need to change this.”

Neuroendocrine Cancers occur when there are changes in neuroendocrine cells (that regulate hormones), which are present throughout the human body. More commonly located in the pancreas, lungs, abdomen, reproductive organs and bowel, NET cancer symptoms can include, weight loss, hot flushes, shortness of breath and diarrhoea.

The Unicorn Foundation will be working with supporting cafes and NET communities around the world to raise awareness and encourage the conversation #LetsTalkAboutNETs.

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