You may find that altering parts of your lifestyle can help you manage and cope with some of your symptoms. Before committing to any lifestyle changes, discuss them with your doctor. Your clinical team may be able to provide personalized advice and supportive treatment or care to manage your specific symptoms.
General symptom management techniques1-4
May be helped by diet:
Bowel Issues (diarrhea or irritable bowel syndrome), Fatigue, Nausea, Appetite changes, Abdominal pain, Weight fluctuation, Mouth ulcers/sore mouth/dry mouth, Flushing
This list is not exhaustive and meant to be used as guidance only. Always make sure to discuss what lifestyle changes are the best for you with your clinical team.
May be helped by exercise led by a physiotherapist or musculoskeletal specialist:
Joint pain
This list is not exhaustive and meant to be used as guidance only. Always make sure to discuss what lifestyle changes are the best for you with your clinical team.
May be helped by exercise
Weight gain, fatigue/sleep disorders, mood swings/low mood, stress
This list is not exhaustive and meant to be used as guidance only. Always make sure to discuss what lifestyle changes are the best for you with your clinical team.
May be helped by mindfulness and relaxation
Mood, fatigue, stress
This list is not exhaustive and meant to be used as guidance only. Always make sure to discuss what lifestyle changes are the best for you with your clinical team.
Altering your diet may help to manage several different symptoms, but since NETs affect everyone differently, there’s no one diet that is suitable for all patients.4-6 Adjusting what you eat based on the symptoms you experience and what your doctor or dietician recommends may help manage your symptoms.
General guidance around diet for NET patients:1,2,4,7
Some foods are more likely to cause bowel discomfort than others, so knowing and avoiding these may help to control some of your symptoms. You can use the table below to help identify foods that may be contributing to your symptoms, and find alternatives to try instead. Make sure you consult your doctor or dietician if you are unsure about your diet and how to best change it to suit your needs.
This list is not exhaustive and meant to be used as guidance only. Always make sure to discuss what diet changes are the best for you with your clinical team. Fatigue is a common symptom in NET cancer patients and may be managed by eating foods that have a low glycemic index (GI). These foods are “slow release” carbohydrates that can help keep blood sugar levels stable for longer.4
Some NETs affect the levels of a hormone called insulin, which can either make your blood sugar too high, or too low.1,4 Having low GI foods can help with high blood sugar, and high GI foods can help with low blood sugar.4 You can use the table below as a guide to help you manage your blood sugar levels, but always make sure to discuss with your doctor for an individual approach suited to your specific needs.
This list is not exhaustive and meant to be used as guidance only. Always make sure to discuss what diet changes are the best for you with your clinical team.
Exercise has a variety of health benefits, both physical and psychological, and can help you with your mood and fatigue levels.8 It’s important to factor the effect of your treatment on your ability to exercise, even if you were very active prior to starting treatment. Ensure you speak with your clinical team before changing your activity level and they may also be able to suggest what kinds of activities are suitable for you. We recommend consulting a physiotherapist or musculoskeletal specialist if you feel your physical activity is restricted, have any pre-existing conditions of musculoskeletal nature or in your joints, or exercise causes pain and discomfort.
Here is some advice to help factor in physical activity to your day-to-day life:
Start with simple, light exercise
Understand what pace is best for you by starting out slow, if you find it is too easy you can increase your pace gradually. Go for short walks and try some simple strengthening activities such as standing up and sitting down.7,8 You may want to set goals to track your progress and positively reinforce yourself.4
Do activities you enjoy
A great way to factor exercise into your daily routine is by doing activities that you enjoy. Examples of this are biking, gardening, yoga, bowling, golf, or fishing.8
Try different activities
Some activities might be easier for you than others. For example, if you have pain in your bones preventing you putting pressure on them, swimming could help take the strain off.9
Team activities can motivate you
Exercising with other people could keep you motivated to exercise and also help you socialize. Try ball sports such as tennis or badminton.8 If you feel comfortable, you could also attend gym classes, but this should be avoided if you have low immunity due to treatment.9 If you’re uncomfortable with exercising with people, try exercising with a pet by walking or playing with them.8
To help you manage fatigue, exercise during the day can help keep you awake and tire you out so you can sleep at an appropriate time. Keep in mind not to push yourself and do only what you feel up to. You may find doing small exercises throughout the day for no longer than 5-10 minutes is more manageable.7,8 Hopefully you will find these activities help with low moods, regulate sleep patterns or work as an effective stress relief.7,8
Stop exercising if you are experiencing any kind of pain such as chest, abdominal, or joint pain or if you feel dizzy, lightheaded, or nauseous. Always contact a doctor if you experience any severe symptoms.8
Cancer Research UK
Find out more about managing symptoms and coping physically with cancer10
You may be experiencing low mood, fatigue, and/or stress at any point following your diagnosis. This can be linked to a number of causes, including treatment, changes in your disease, and/or changes to your personal circumstances like home, family and work life. The techniques below can help you cope with the feelings you may be experiencing in this time.1,4 Consider consulting a psycho-oncologist to help advise you on what techniques may be suited to your individual needs and further support if required.
It’s important to identify your feelings and concerns to help find the right resources to help you cope. It is positive to think about the present and the well-being activities that can help you take care of yourself, rather than your disease or treatment. Try to focus your attention on what you can do to feel better as this will hopefully help you feel more empowered and capable. If your mood and emotions become hard to bear, reach out to your clinical team to receive specialized help to best suit your needs.
When speaking to your doctor or someone from your clinical team and/or reading about gastroenteropancreatic neuroendocrine tumors (GEP-NETs), you may understandably come across some unfamiliar terminology. This section talks about some of the terms you may hear to describe your disease over time, during or after treatment and/or monitoring.
The term stable disease means that the tumor is neither growing nor shrinking to a significant extent.15 It also means that no new tumors have developed, and that the cancer hasn’t spread to other parts of the body.15 We understand it can be discouraging to hear that your tumor hasn’t shrunk but stable disease should be taken as good news, since it can mean your treatment is working to stop the tumor from growing or spreading.
You may have come across the term progression. Progression commonly means that a tumor has grown in size or that a new tumor has appeared in the body.15 This may or may not result in a worsening or change in your symptoms.16 Although GEP-NETs can be slow-growing, most people will experience progression during their cancer journey,17 and people may experience multiple stages of progression throughout the course of their treatment.18
As a GEP-NET patient you will normally be monitored periodically.19 Alternatively, a change or worsening in your symptoms can trigger a physical examination.16
Scans help doctors to identify progression, as they provide detailed images of tumors inside the body.16,19 From these images, doctors can measure the size of tumors to determine whether they have grown and by how much.15 Depending on the type of scan, doctors can also see if any new tumors have emerged, and where these are in the body.16,19
Other tests, such as urine or blood tests, may also be used in combination with scans to help identify progression. These tests measure levels of hormones in the body which may be associated with tumor growth.20-22
For some people with GEP-NETs, progression can cause worsening of symptoms, or even bring about new symptoms.16,23,24 Not all symptom changes have to mean a worsening of your disease, but a medical check-up may be necessary.16,19 It’s important to talk to your doctor as soon as possible if you do notice a change in your symptoms or experience any new ones. Maintaining routine medical follow-up will help detect any changes even in the absence of symptoms.19 This will enable better treatment decisions and adjustment of medication if required.16,19
It’s important to remember that for the majority of people with GEP-NETs, progression is an inevitable part of living with the disease.17,23 If the disease progresses, the clinical team will be able to propose alternative therapeutic options that may help slow down the progression and control the different symptoms.18