10 November is World Neuroendocrine Tumor Awareness Day. On this day patients, doctors and supporters of the cause organize over 1000 events around the world in an effort to make the public aware of the existence of this rare and difficult-to-diagnose cancer, which caused the death of Steve Jobs before 4 years.
In Bulgaria on 10 November 2015 d. The International Alliance for Neuroendocrine Tumors (INCA) and Association of Cancer Patients and Friends (APOZ) organize an information campaign in Sofia and Plovdiv, where central walkways feature the disease's symbol - Nettie the zebra - while medical students hand out leaflets about the rare disease to passing pedestrians, about which very little is known.
For NO
Neuroendocrine tumors (NOT) are a rare type of cancer and can form in various tissues and organs throughout the body, containing neuroendocrine cells. Most of them are found in the gastrointestinal tract, lungs and pancreas.
Some NET patients remain undiagnosed for years due to vague or no symptoms. Even diagnosing people with pronounced symptoms is difficult, because the symptoms of NET resemble those of other diseases. The stage of the disease at the time of diagnosis is very important, because localized disease can be cured. A large proportion of patients receive a diagnosis, when metastases are already present, which makes it difficult to control the disease.
Studies
In a global study conducted by the International Alliance for Neuroendocrine Tumors (INCA) and Novartis in 2014 r. among near 2000 the patient with the disease from 12∗ countries, one of which is Bulgaria, is indicated, that most patients have metaverage with 6 healthcare professionals, before receiving a diagnosis.
The data shows, that5 to everybody 100 000 man are diagnosed with NET every year. Due to common and difficult to diagnose symptoms60-80% of patients received a late-stage diagnosis, when they already had metastases.
Symptoms
The symptoms are usually very general: heat waves, diarrhea; disturbed balance of intestinal flora, chronic cough, recurrent lung infections, skin rashes, burning behind sternum. That's why 45% of the patients did not receive NET as a first diagnosis. The most common primary diagnoses are irritable bowel syndrome (39%) or gastritis (38%). 13% of the participants were first diagnosed with asthma, but 32% are diagnosed with anxiety, psychosomatic or psychiatric disorders.
The average time from first symptoms to receiving a diagnosis of NET in study participants was24 months. However, on 29% of the patients needed themover 5 years, to arrive at this diagnosis.
What do patients need?
71% of the participants indicate, that there is a great need for improvements in the diagnostic process of NETs, including a need for further information on the long-term impact of the disease (60%) and faster and easier access to neuroendocrine tumor specialists (53%)
NO in Bulgaria
From 2012 r. in the oncology practice in Bulgaria, the first clinical guide of its kind was adopted for diagnosis, treatment and monitoring of the most common neuroendocrine tumors originating from the chest and gastrointestinal tract. The guide is based on scientific models, which are being worked on in Western European and American oncology.
Doctors advise: if you observe, that general symptoms persist, seek more expert opinions.
The campaign
The campaign in Bulgaria is conducted byThe International Alliance for Neuroendocrine Tumors(INCA) andAssociation of Cancer Patients and Friends (APOZ).
The International Alliance for Neuroendocrine Tumors(INCA) is a network of independent patient organizations from 15 countries around the world, with the main goal of being the world's voice in support of the people, living with NET.
