Multimedia News Release: World NET Cancer Day: research confirms, over 60% of neuroendocrine (NET) cancer patients are Stage 4 when diagnosed - The Unicorn Foundation

7 Nov 2019 4:02 PM

Sunday, November 10 is 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.

For broadcast quality video and high-res images, please visit the Multimedia News Release: 
http://news.medianet.com.au/unicorn/net-cancer-day-2019

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. Participating cafes will be serving coffees in “Let’s Talk about NETs” branded coffee sleeves to encourage the conversation. 

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 of patients.  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 evidence obtained from this study really does support the World NET Cancer Day message that neuroendocrine patients need greater access to information, support, care and treatment.” 

Ms Leyden continues, “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. Neuroendocrine Cancers (NETs) are frequently misdiagnosed with conditions such as: anxiety, menopause, Irritable Bowel Syndrome (IBS) or diabetes. 

On November 10 The Unicorn Foundation will be working with supporting cafes and NET communities around the world to raise awareness. Participating cafes will be serving coffees in “Let’s Talk about NETs” branded coffee sleeves to encourage the conversation #LetsTalkAboutNETs.

 

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 View the full article "Unmet needs in the global neuroendocrine tumors (NETs) community: assessment of major gaps from the perspective of patients, patient advocates and NET health professionals" conducted by the International Neuroendocrine Cancer Alliance (INCA) and published by the International Journal of Cancer here: https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.32678

 

For a list of cafes and workplaces showing their support head to: http://www.unicornfoundation.org.au/news/236/2019-world-net-cancer-day-venues 

Neuroendocrine Tumour (NETs) Facts and Stats*  

·   7 out of every 100,000 people globally are diagnosed with NETs each year, incidents are like that of Ovarian Cancers, Thyroid Cancers, Liver Cancers and Kidney Cancer, yet awareness amongst the medical community and general public is still relatively low.

·   NETS effects men and women of all ages, including children

·   NET symptoms can include: weight loss, hot flushes, shortness of breath and diarrhea

·   Symptoms are often similar to more common conditions: IBS, asthma and anxiety

·    60% of NETs are advanced by the time patients are correctly diagnosed and many patients have secondary growths at the time of diagnosis (stage 4 cancer)

·    NETs can arise throughout the body in organs that contain neuroendocrine cells such as, stomach, bowel, lungs and pancreas

·    Less than 25% of NET patients feel that their needs for more information are met at diagnosis

·  NETs – “if you don’t suspect it you can’t detect it” – awareness is the key

 

 

To find out more about The Unicorn Foundation, visit www.unicornfoundation.org.au, follow us on twitter @unicornfound, or find us on facebook.com/unicornfoundation .

 

“Let’s Talk About NETs” has been created by the International Neuroendocrine Cancer Alliance (INCA) ahead of World NET Cancer Day (Sunday, 10 November) to raise awareness for Neuroendocrine tumours (NETs) and is supported by the Unicorn Foundation who is a founding partner of the alliance. For more on World NET Cancer Day, visit https://incalliance.org/

  

FOR ALL MEDIA ENQUIRIES AND INTERVIEWS CONTACT

Name:            Megan Mitchell
Company:       Huckster PR
Phone:            0412 581 858
Email:            [email protected]

 

Name:           Simone Leyden
Company:     Unicorn Foundation
Phone:           0419 871 975
Email:           [email protected]

 

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