Living with a neuroendocrine tumor (NET)

Here are some tips on managing different symptoms

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

How changes to diet may help your symptoms

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

Don’t cut out entire food groups (unless directed by your doctor or dietician)
Try using a food diary to see whether any specific foods affect how you feel
Reduce your portion sizes but eat more frequently
Eat meals slowly
Drink water or diluted fruit juices regularly throughout the day

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.

General dietary adjustments to help manage symptoms1,2,4

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.

The benefits of exercise

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:

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

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The benefits of mindfulness and relaxation

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.

Talk about your emotions You may want to talk with friends, family, a dedicated support group, a psycho-oncologist, or a psychotherapist about how you feel. Talking about your feelings and questions may help you find better solutions and make it easier for those close to you to support you in coping with your disease.11 Activities such as art, music, dancing, and journaling or keeping a diary may be a useful outlet to explore your feelings and express your emotions.12-14
Try guided meditation, breathing exercises, or yoga Anxiety and stress can be managed through these techniques, you may want to try these techniques to get ready for bed to help your sleep. You can do this at home, by yourself, or you may want to join a group.
Take up a new hobby Trying new things can help distract you and keep you occupied, you may want to join a club to be around people. Finding a new purpose or interest may also help you adapt to a new normal.
Plan activities and events Having an activity or event to look forward to can raise your mood and help to distract you.
Make a schedule Planning your day and scheduling activities, chores, or errands can help you structure your day and allocate energy and rest times throughout your day. Having a sleep schedule can also help with fatigue and tiredness.

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.

Understanding your disease

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.

Understanding stable disease

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.

Understanding progression

What is progression?

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

How is progression identified?

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

What does progression mean for me?

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

What happens after progression is identified?
Your clinical team will aim to slow progression as much as possible and control your symptoms with medical therapy. Once progression has been identified, your doctor or clinical team will evaluate your overall patient profile and suggest a therapy and/or alternative care. There are many different treatments available, and it’s normal for people with GEP-NETs to receive numerous options over the course of their care.18
Understanding relapse
If the tumor returns after the original course of treatment it is called a relapse.15,25 The tumor may come back in the same place, nearby, or in another place of the body. It is important to speak to your doctor about the possibility of the GEP-NET returning to help you feel more prepared if it does. When a relapse occurs, your doctor will initiate a new round of testing and discuss your treatment options with you.25
References: 1. Neuroendocrine Tumor Research Foundation. Managing Symptoms of Neuroendocrine Tumors. Available at: Accessed: October 2021. 2. Neuroendocrine Tumor Research Foundation. Eating Right with Neuroendocrine Tumors. Available at: Accessed: October 2021. 3. Cancer Treatment Centers of America. Nutritional Support. Available at: Accessed: October 2021. 4. Neuroendocrine Cancer UK. The NPF Handbook. Available at: Accessed: October 2021. 5. Middle East Neuroendocrine Tumor Society. Nutrition and Neuroendocrine Cancer Int Ed 2021. Available at: Accessed: October 2021. 6. Neuroendocrine Cancer UK. Diet & Nutrition. Available at: Accessed: October 2021. 7. Macmillan Cancer Support. Managing the Symptoms of Cancer. Available at: Accessed: October 2021. 8. Neuroendocrine Tumor Research Foundation. Exercise while Living with a Neuroendocrine Tumor. Available at: Accessed: October 2021. 9. Cancer Research UK. Exercise guidelines for cancer patients. Available at: Accessed: October 2021. 10. Cancer Research UK. Coping physically. Available at: Accessed: October 2021. 11. Macmillan. How to tell people you have cancer. Available at: Accessed: October 2021. 12. Cancer Research UK. Trying to stay positive. Available at: Accessed: October 2021. 13. Cancer Research UK. Art therapy. Available at: Accessed: October 2021. 14. Cancer Research UK. Managing your emotions. Available at: Accessed: October 2021. 15. Eisenhauer EA, Therasse P, Bogaerts J, et al. New response evaluation criteria in solid tumours: Revised RECIST guideline (version 1.1). Eur J Cancer. 2009; 45(2): 228–247. 16. de Mestier L, Dromain C, d’Assignies G et al. Evaluating digestive neuroendocrine tumor progression and therapeutic responses in the era of targeted therapies: state of the art. Endocr Relat Cancer. 2014; 21(3): R105–R120. 17. Fazio N. Watch and wait policy in advanced neuroendocrine tumors: What does it mean? World J Clin Oncol 2017; 8(2): 96-99. 18. Pavel M, Öberg K, Falconi M et al. Gastroenteropancreatic neuroendocrine neoplasms: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2020; 31(7): 844–860. 19. Merino-Casabiel X, Aller J, Arbizu J, et al. Consensus document on the progression and treatment response criteria in gastroenteropancreatic neuroendocrine tumors. Clin Transl Oncol. 2018; 20(12): 1522–1528. 20. Sansone A, Lauretta R, Vottari S, et al. Specific and Non-Specific Biomarkers in Neuroendocrine Gastroenteropancreatic Tumors. Cancers (Basel). 2019; 11(8): 1113. 21. Caplin M, Sundin A, Nillson O, et al. ENETS Consensus Guidelines for the Management of Patients with Digestive Neuroendocrine Neoplasms: Colorectal Neuroendocrine Neoplasms. Neuroendocrinology. 2012; 95(2): 88–97. 22. Niederle B, Pape U-F, Costa F, et al. ENETS consensus guidelines update for neuroendocrine neoplasms of the jejunum and ileum. Neuroendocrinology. 2016; 103(2): 125–138. 23. Strosberg J, Wolin E, Chasen B et al. Health-Related Quality of Life in Patients with Progressive Midgut Neuroendocrine Tumors Treated with 177Lu-Dotatate in the Phase III NETTER-1 trial. J Clin Oncol. 2018; 36(25): 2578–2584. 24. Kos-Kudła B, Ćwikła J, Ruchała M et al. Current treatment options for gastroenteropancreatic neuroendocrine tumors with a focus on the role of lanreotide. Contempt Oncol (Pozn) 2017; 21(2): 115–122. 25. Cancer.Net. Neuroendocrine tumors: Types of treatment. Available at: Accessed: October 2021.