This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France
Information about the emotional, physical and social challenges of living with NETs.
Helen
If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
If you (or a family member) have been diagnosed with neuroendocrine tumours (NETs), you may feel a range of strong emotions. These can include shock, anxiety, fear, anger, sadness, distress or guilt. These are all natural reactions to a cancer diagnosis or being told you have a lifelong illness.
Different people cope differently with a diagnosis of cancer or a long term condition. There is no right or wrong way to deal with it, it’s about finding what works for you.
“…I learned that, with the right treatment, the right monitoring and the right surveillance, and being proactive, myself, that I could actually live for a long time, with a reasonably normal life, the same as people who don’t have this kind of illness.”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“…life changes when you’re told you have any form of cancer, you can’t expect it to be as it was yesterday, but you can cope with it today…”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“It is very often difficult, psychologically, to put the disease into perspective.”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
The time between appointments to diagnose or monitor your condition may be days, weeks, or months, which can be stressful.
Try not to worry too much, however, as NETs are often slow growing tumours and your cancer should not be getting any worse before your next visit. If you are worried, contact your doctor or specialist nurse if there is one in your NET team, or talking to your family and friends may help.
The good news is that treatments and support for neuroendocrine cancers are improving all the time, and many people with NETs can lead active, healthy lives, both during and after treatment.
Depending on where you live there may be a range of psychology services available to you, such as face-to-face consultations or telephone services. Your multidisciplinary NET team or primary physician can advise on what counselling services are available in your area.
Access to psychology services can be particularly useful if you find it difficult to talk to family or friends. Such services can offer help with certain aspects of living with NETs such as living with uncertainty and managing fatigue.
They can also provide you with techniques to manage any anxiety that you may be feeling, particularly in the lead up to having scans and the subsequent wait for results.
There are also a number of mindfulness and relaxation apps for smartphones and other devices available so you can find one that works for you. This website includes videos of patient stories and links to NET patient support groups in different countries that might help you deal with your reactions to NETs.
“It was overwhelming and very scary to be faced with a cancer diagnosis but it’s great to know that there are people with NETs out there with long survival rates.”
* Quote from patient who completed an anonymous survey conducted in five countries in 2015
You might experience any of the following emotions after being diagnosed with NETs and during treatment.
Even if you’ve been having tests to find out the cause of your symptoms, you may be shocked to learn these are due to a rare type of cancer. You may find it hard to believe you have cancer, particularly if you have had no symptoms, if your tumours were found after a routine medical check-up or picked up during investigation or surgery for other reasons.
Some people with NETs may feel a sense of relief to finally know they have a correct diagnosis, after having gone through so many medical tests and doctors’ visits.
You may feel angry about your diagnosis of NETs and how this could affect your life. You might be frustrated that it took so long to get a proper diagnosis, or angry with doctors who may have dismissed your concerns, or who wrongly diagnosed you with another condition.
You will probably have several concerns following your diagnosis. You may be anxious about your NETs treatment, the side effects and how these could affect your life. A common fear among people after treatment for NETs is the fear that their cancer will come back (recur) after treatment.
Many people living with NETs are also worried about the impact on their family life and on their family life, work and finances.
It’s natural to feel sad when you find out you have cancer. Give yourself permission to cry if you need to. Talk to someone. If your sadness continues for a while, and you lose interest in doing activities that you normally love or can’t seen an end to the sadness, then you could have depression.
Please speak to your doctor if this is the case as he or she may be able to prescribe treatment to help you.
People who are diagnosed with a rare cancer such as NETs will often feel isolated from their family or friends who will probably be unfamiliar with the condition. But you don’t have to face this alone. Contact patient support groups in your country to talk to other people with NETs and carers.
Ask your doctor or specialist nurse to refer you to a local counsellor or psychologist who can help you understand and come to terms with what you’re going through.
Unlike other cancer patients or people with long-term illnesses, many people with NETs will not always look ill or have treatment-related side effects that affect their appearance.
So your friends or family may assume you’re OK and think you have recovered. They may also think you’re just ‘hanging on’, looking for attention. This may make you feel guilty that you don’t fit into society. You also may feel guilty that you could become a burden to your family, or guilty that your diagnosis of NETs could affect your job or finances.
Don’t be afraid to talk to someone about how you feel.
Crying is a healthy way to release your feelings of stress but it can be difficult to do in front of other people.
Recognising and expressing your emotions can help you to manage your psychological and physical health. At first, you may find it easier to talk to someone besides your doctor, who can really understand your emotions. Find out what works for you:
There may be focus groups or courses available to you on things such as living with uncertainty, fatigue management and mindfulness. Ask your doctor or specialist nurse about what is available in your local area.
Living with NETs
This section of the website gives you information about the emotional, physical and social challenges of living with neuroendocrine tumours.
Remember to speak to your doctor about your condition and ways of coping; this section should not replace their professional advice.
Read practical tips from others to help make your life with NETs easier.
Patient support groups for NETs can often provide social and emotional support.
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
Living with NETs - your resource for neuroendocrine tumours information and support 
