If you have any questions about the possible side effects of NETs treatments, then ask your doctor for more information. If you experience severe side effects, your doctor may be able to change your treatment or prescribe some medication to relieve these symptoms.
See the NETs and work section on this website to find out how making adjustments to your work schedule may help you to manage the impact of some treatment side effects.
Flushing of the skin is a very common symptom of carcinoid syndrome, and may appear as a red or purple blush that appears suddenly on the face or neck. These flushes may also occur on the back or legs. They can last from around 30 seconds to as long as 30 minutes. In people with NETs, skin flushing is more likely to be “dry” flushing (without sweating), rather than “wet” flushing (with sweating).
Flushes in people with NETs can be triggered by emotions or stressful situations, by eating certain foods, or by drinking alcohol, caffeine, or hot liquids. Generally, you should avoid triggers, such as:
The tips listed below may help to reduce the number of flushes you have or help you to cope with them:
Some medications, such as antidepressants, may also make symptoms worse. Talk to your doctor to see if there are any treatments you should avoid but don’t stop taking any medications without their advice.
Feeling exhausted and lacking energy for day-to-day activities (fatigue), is the most common side effect of treatment for NETs. The exhaustion can range from mild to severe, and is usually worse during treatment.
Some people living with NETs also experience severe tiredness and fatigue after completing treatment. Fatigue can also affect your emotions, relationships, work and other parts of your life so it is important that you recognise and try to manage it.
Tell your doctor about your fatigue, and any problems that may disturb your sleeping patterns, like depression, anxiety and stress. Try some of the following changes to help you find a good balance between activity and rest.
Keep track of your fatigue in a journal. You may notice that you have more energy at certain times of the day:
Some people with NETs can experience pain in and around the organs where their tumours are located. Pain may also be a side effect of some NETs treatments.
If you are suffering from other physical or emotional effects due to NETs, this can make it more difficult for you to handle pain. So consult your doctor to find out if they can recommend any treatments for your pain or ways that you can help to reduce this.
Exercise might feel like the last thing you want to do as someone living with NETs, particularly when you may constantly feel tired. Research shows, however, that exercise is one of the best ways to improve your energy levels and help relieve fatigue in cancer patients.
Studies of women with breast cancer show that regular exercise may strengthen their cancer resistance, and even help prolong life. In interviews, some NETs patients have also said that staying active has made them feel physically stronger and healthier.
You may be more motivated to take part in an exercise routine if you’re in a group environment. This can also help you to make new friends and share your exercise goals.
The benefits of exercise include:
Always talk to your doctor before starting any new exercise activity or programme. For help in finding or starting a local program, ask them to refer you to a physiotherapist, an occupational therapist, an exercise specialist or a rehabilitation specialist.
Look for further information about local exercise activities by:
If you live life in the fast lane, you may find it hard to relax and slow down. However, it is important to find some peace when you are dealing with difficult times during your living with NETs journey.
Relaxing activities called mind-body interventions can help you to:
Learning to relax your body and your mind can also help you to feel good and more in control of your situation. This can have a positive effect on your thoughts. You’ll feel calmer and more capable of thinking practically about your problems.
Relaxation techniques to try
“I’ve always found the simple things help me relax – reading a book, watching a really good TV programme…”
“I do yoga three or four times a week, it helps me to calm down, to feel good.”
“…riding a bike is good, as it supports your weight, and you can go at your own pace…”
One of the best ways to find a teacher or a course for these types of relaxation activities is by personal recommendation from someone you trust. Ask your doctor to refer to you to a physiotherapist, occupational therapist, or social worker that may be able to provide you with details about these classes at locations in your area.
Look for further information about local relaxation classes by:
Patient support groups for NETs can often provide social and emotional support
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs
View a list of specialist NETs clinics and NETs hospital units in Europe