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 NETs, such as when you were diagnosed, where the primary tumours were found, and any information that may be useful to share with other clinicians.
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 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.
Download the Living with NETs Medical Details and Treatment Tracker as a PDF, or as a Word document that you can edit. This document is not intended to be an official or complete medical record but to serve as a means for you to log information that you need to remember in one place. It can also act as a discussion document that you could share with the multidisciplinary team who look after you.
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 carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs