“Symptoms can be due to NETs occupying a physical space in the body or due to the release of hormones from the tumours.”
“Before I was diagnosed I was experiencing vague symptoms that you could associate with all sorts of everyday illnesses.”
“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.”
“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.”
“If the tumours produce hormones, then the symptoms experienced will be related to those hormones.”
““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 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.”
Find out how NETs are diagnosed and the tests that healthcare professionals may use to monitor NETsDiagnosis & Testing
Read about treatment options for NETs, including surgery, radiotherapy and medicationsTreatment Options
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