Read and hear answers to some common questions that patients with neuroendocrine tumours (NETs) have asked.
Neuroendocrine tumours or ‘NETs’ is the umbrella term for a group of tumours that develop in the cells of the neuroendocrine system (hormone system) throughout the body.
Neuroendocrine cells are distributed throughout the body and so NETs can develop wherever these cells are found, which includes the gastrointestinal (digestive) system (e.g. the stomach, bowels and pancreas) and the lungs.
Like many other types of cancer, the exact causes of NETs are unknown. Most NETs are not associated with a genetic syndrome; however, about 10% are associated with some rare inherited diseases.
Although NETs are infrequent, their incidence is rising. This is mainly due to increased awareness of the condition and improved diagnostic testing. NETs are now the fastest growing class of cancers worldwide, accounting for around 2% of cancers. Most NETs occur in people aged 50–60 years old.
NETs symptoms will vary depending on where the tumour is located in the body. They don’t usually cause noticeable symptoms until the tumors have already grown and spread. Common NETs symptoms include diarrhoea, flushing of the skin (particularly the face), wheezing, stomach pain, loss of appetite, bloating and low blood sugar.
NETs are generally grouped together based on the part of the body where they are found or the hormones they produce.
The main types of NETS are gastrointestinal NETs (GI-NETs), gastroenteropancreatic NETs (GEP-NETs), pancreatic NETs, and lung NETs.
Carcinoid syndrome describes a distinct group of symptoms that some people with NETs may get when tumours starting in the digestive system spread to other parts of the body – usually the liver. The main symptoms include diarrhoea, flushing of the skin (particularly the face), stomach cramping, heart disease, and wheezing.
A combination of tests will be used to diagnose NETs. These will include blood tests, urine tests, and imaging scans, such as a CT (computed tomography) or CAT scan, MRI (magnetic resonance imaging) scan, or PET (positron emission tomography) scan. Diagnostic nuclear medicine tests (scintigraphy) may also be used for NETs.
It can often take 5 to 7 years to be properly diagnosed with NETs since many symptoms of NETs are common to other conditions. Many doctors are also unfamiliar with NETs, which can delay its diagnosis. Ask to be referred to a NETs specialist if you suspect you have NETs symptoms.
Asking questions and providing information to your doctor at your medical visits can help to improve your NETs treatment, and help you feel more in control of your health. Prepare for your next visit by taking a list of questions to ask about your NETs diagnosis, prognosis and treatments.
Treatment for NETs mainly depends upon the location of the tumour and whether the cancer has spread to other areas of the body. Some NETs tumours can be removed surgically. Other treatments can be used to help destroy the tumours, control their growth, and reduce symptoms.
The side effects of different NET treatments will vary from person to person, and will depend on the specific treatments, combination of therapies and dosing received.
Ask your doctor for more information about the possible side effects of NETs treatments for your condition or overall health.
A prognosis is a doctor’s opinion about how well you will recover from an illness. The prognosis and survival rates of NETs patients depend on several factors. Only a specialist who is familiar with your medical history, your responses to diagnostic tests for NETs and treatments for NETs can give you an individual prognosis.
A multidisciplinary team (MDT) for NETs consists of a group of healthcare professionals from different areas of medicine who will carry out diagnostic and monitoring tests, and advise people living with NETs about their treatment options, and manage their overall care.
There are various ways that might help you to cope with the emotional impact of NETs. These include sharing your feelings with your family and friends, gentle exercise, relaxation therapies and contacting NETs patient support groups.
Living with NETs is not always easy but there is still a lot you can do to help make each day easier. Various practical tips can help you to adapt your diet, exercise, lifestyle and work schedule to cope with NETs on a daily basis.
Sharing your NETs diagnosis with friends and family can help to ease your burden. Before you do this, know the key points you want to share, discuss this when you feel ready, and ask a close friend to help you to explain it. Remember, you don’t have to share every detail.
Avoiding certain foods may help to reduce some symptoms of NETs and carcinoid syndrome. But do not exclude any foods unless your doctor has told you to since your dietary needs will depend upon your individual health. Ask your doctor what is suitable for your situation.
NETs patients are generally advised to eat regular, well-balanced nutritional meals of moderate portions to maintain a healthy weight. But diet and nutrition alone will not help you completely recover from NETs. So it is important to follow your doctor’s dietary advice along with your specialist medical care.
Learning to relax your body and mind can help to reduce the stress of living with NETs and help you feel more in control of your health. Some of the following relaxation methods may help: meditation, yoga, mindfulness, t’ai chi, music therapy and massage.
Regular, gentle exercise is one of the most important activities you can do when you have cancer. It can help to improve energy and relieve fatigue, and may prevent or slow down the recurrence of cancer. Ask your NETs doctor to refer you to a physiotherapist or exercise specialist for advice.
Starting new hobbies or interests can help take your mind off your NETs. Do something you enjoy individually or as part of a group, like learning a new craft or language; taking a new computing or Internet course; reading, gardening, cooking, fishing or listening to your favourite music.
Work can be an excellent way to keep your mind focused on other things besides health. Many people with NETs continue working for months or years after they are diagnosed. To do this you may need to adjust your hours for medical care. Some people with NETs decide to take a break or retire.
As someone living with NETs, you may need to travel long distances for tests, treatments and medical appointments. This can be very tiring. Ask your doctor if you can attend local medical centres for NETs tests. Also ask if they can conduct some of your medical appointments by telephone or perhaps via an Internet calling app such as Skype.
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs
Information about the emotional, physical and social challenges of living with NETs
Patient support groups for NETs can often provide social and emotional support