This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France
Information about the emotional, physical and social challenges of living with NETs.
Helen
If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
Symptoms will vary depending on where the neuroendocrine tumours (NETs) are located in the body, how fast they are growing and also if they have spread around the body. Symptoms will also depend on the type of NETs – gastrointestinal NETs, pancreatic NETs and lung NETs – can all produce very different symptoms.
NETs may produce no symptoms at all, or if they do symptoms can be very vague and diverse, which can make them difficult to diagnose initially.
Visit the practical tips and tools section for information on managing symptoms of NETs.
“Symptoms can be due to NETs occupying a physical space* in the body or due to the release of hormones from the tumours.”
*Such as pressing on or blocking organs in the abdomen.
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
“Before I was diagnosed I was experiencing vague symptoms that you could associate with all sorts of everyday illnesses.”
Opinions expressed in this video are purely individual, personal opinions of the patient and by no means constitute advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“Some people don’t have any symptoms. However, the majority of people that have tended to see me do experience gastrointestinal symptoms such as diarrhoea, bloating, abdominal pain and nausea.”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
“I experienced embarrassing flushing, any time I was stressed or under pressure – it really made my professional life very difficult because it was so embarrassing; I used to hide and run my hands under cold water to try to cool down and calm myself.”
Opinions expressed in this video are purely individual, personal opinions of the patient and by no means constitute advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“If the tumours produce hormones, then the symptoms experienced will be related to those hormones.”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
““I was very tired before my diagnosis of NETs. Fatigue was the reason I finally went to the doctor.””
Many doctors are unfamiliar with NETs or neuroendocrine cancer. So they are less likely to suspect this condition when they are faced with symptoms.
It can often take 5 to 7 years for people with NETs to receive a proper diagnosis. On average people see three different doctors before they are finally diagnosed with NETs. This delayed diagnosis can happen for several reasons given below.
NETs produce symptoms that are common to many other diseases. These symptoms include diarrhoea, flushing of the skin (particularly the face), wheezing, stomach pain, loss of appetite and bloating. Some people have no symptoms at all.
Because NETs symptoms mimic other conditions, they are often misdiagnosed as another condition such as irritable bowel syndrome (IBS), Crohn’s disease, peptic ulcer disease, gastritis, asthma, blood glucose problems, the menopause or blood pressure problems.
NETs are often small; some neuroendocrine cancers can be less than a centimetre in size.
There are many types of NETs, and a series of specific NETs tests is necessary for a definitive diagnosis.
In some cases, NETs are found accidentally at an early disease stage during regular health checks, or during investigations or surgery for other conditions. An early diagnosis may help to improve the course of some NETs.
““Something I say now to everybody who’s looking for a diagnosis, make a note of your symptoms, see if you can tie them in to something else that’s causing them. Then take that evidence to your doctor. Don’t do what I did, which was to ignore it because I was too busy at work.”
Learn about NETs
If you have – or someone you know has – neuroendocrine tumours (NETs) or possible symptoms, then learning more about NETs may help reassure you that there are treatments available and many people live with NETs for long periods with relatively normal lives.
Find out how NETs are diagnosed and the tests that healthcare professionals may use to monitor NETs.
Diagnosis & Testing
Read about treatment options for NETs, including surgery, radiotherapy and medications.
Treatment Options
Living with NETs - your resource for neuroendocrine tumours information and support 
