NET: Cancer in Camouflage

NET cancer day meetingMedical students are often told, “When you hear the sound of hoof beats, think zebra, not horses.”

Many rare diseases are not easily recognised, none more so than NET (neuroendocrine tumour), whose far–reaching though often unclear symptoms are frequently slow to be diagnosed. This is why NETs-cancer has adopted the zebra, with its unique camouflage stripes, as its international symbol.  

Carmen-Miranda Kleinegris has firsthand experience of the difficulty of recognizing NET. In 2008, whilst on holiday in Turkey, Carmen was diagnosed with an atypical carcinoid in the lung. “After many frustrating years of seeing doctors and psychologists, searching for a cause for the symptoms I was experiencing, I had my answer,” explains Carmen. “I had NET in the lung, a condition that nobody seemed to know anything about”.

NET is a collection of different neuroendocrine tumours, most often occurring in the gastrointestinal tract, pancreas and lungs. The symptoms of NET can often be mistaken for those of more harmless ailments; the average GP will only encounter one NET patient in his or her entire career. Research has shown that NET patients live with unexplained medical symptoms for an average of 5 years.

Steve Jobs is just such a rare case, not only a unique figure, he died of the consequences of a pancreatic NET rather than pancreatic cancer as generally reported, requiring a different kind of treatment.

“I couldn’t find anything about NET in my native language,” says Carmen. A year later, after treatment that included a lung operation, Carmen decided, “with my oncologist Babs Taal and friend Willy Brinkman, to produce accessible information about NET”. They wrote ‘Men Have Hot Flushes Too’. The book tells the stories of people living with NET and discusses various issues connected with the disease and diagnosis.

NET-groep logo“This led to the start of NET-groep,” declares Carmen.

Nine enthusiastic patients and their relatives were implicit in the development of NET-groep. “Within a year we had 345 members, all willing to roll up their sleeves and lend a hand. We get an average of 1,300 visits to the website every month, a clear indication of how great is the need for information and support”.

NET-groep has produced a brochure, a newsletter, three seminars and is releasing three short films about NET on YouTube. The November launch of the first film dealing with various types of NET, diagnosis and research, was followed in mid-December by a film dealing with treatment options after diagnosis, and the third, where patients share their own experiences, set for 2012. A postcard project with four specifically designed zebra images aims to raise money and awareness.

Carmen explains, “We strive for more knowledge, better treatment options and earlier diagnosis for NET and other rare diseases. Of course, there are many frustrations but we also have wonderful results, fantastic relations with patients, NET specialists and many people in the rare disease community. So the glass is more than half full!” concludes Carmen.

This article was first published in the January 2012 issue of the EURORDIS newsletter
Author: Irene Palko
Photo credits: © NET-groep


Page created: 17/12/2011
Page last updated: 06/08/2013
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