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.
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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.
You may see several different healthcare professionals throughout your journey with neuroendocrine tumours (NETs) or neuroendocrine neoplasms (NENs), so consider creating a “cheat sheet” or document containing all of your important medical and treatment information that you can share with them as needed.
This should save you having to repeat yourself every time you see someone new by giving the essential details about your care at the start. It will also provide you with a reminder of any tests or treatments that you have had, and any side effects that you may have experienced.
An example can be downloaded from this page.
The following information may be useful to include:
Your name, date of birth, and main contact details, including the name and contact details of someone who could be contacted in an emergency.
Details of your specific NET history, such as when you were diagnosed and where the primary tumour and any subsequent tumours (i.e. metastases) were found. Other information that may be useful to note is the grade and stage of your NETs and whether they have been described as functioning tumours.
It may be useful to have a list of any tests you have undergone, when these were performed and what the findings of these tests for NETs were. Ask a member of your healthcare team to help you with this.
You will probably need to ask a member of your healthcare team to help you complete this information, but you may find it handy to have a note of your treatment goals, and list out the treatments you have had or plan to have, and details of any medication you are taking for NETs.
Logging any symptoms or side effects that you may experience before or during treatment can be important. Try to note the date and time, and severity if you can. Always consult a doctor if you experience any untoward effects, even if you are not sure they are due to your medication.
Write down the names and contact details of the healthcare professionals who are looking after you, such as your primary care doctor or nurse, and the main specialist NET doctor that is coordinating your care.
You may find it useful to note down any allergies that you have or other medical conditions that you may be receiving treatment for. Other details such as your height and weight may also be useful to include.
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 
