Telling friends and family

It’s up to you to decide when to talk to your friends and family about your diagnosis. Sharing your hopes, fears, and medical updates with people can help bring you closer and ease your burden. First, think about how much you want to share. You may want to briefly explain what type of NETs you have, which treatments you might need, and what your long-term outlook or prognosis is.

People usually tell their spouse or partner first, then a few other family members and close friends. It’s also important to tell your children so they can understand. Some NETs are hereditary and may be passed down from parents to children. If you have or plan to have children, it is important to talk to your doctor to understand if you may have a hereditary form of NETs.

As you talk with others, you may want to write down the questions that come up so that you can discuss them with your doctor or your multidisciplinary team.

You may feel comfortable to explain all this to one or two close friends, either face-to-face, or over the telephone, but it may get tiring to tell a lot of people. Ask your friends to help explain your condition if you don’t want to talk about it to your family.

If you want to share your thoughts with a group of close family or friends who may not live near to you, consider keeping in touch with them through social media, either by creating a private Facebook group or by using a chat app on your smartphone, a monthly email, letter, or phone call.

Tips for telling others

  • Know the key points you want to share
  • Break the news when you feel ready
  • Be prepared for questions, but don’t feel like you have to answer all of them
  • Draw boundaries. You don’t have to share every detail about your diagnosis with everyone
  • Ask a close friend or relative to help explain your condition to other people

Help your friends adjust

Your friends may also be looking for a comfortable way of talking to you about your diagnosis. They may want direction on how to behave with you. Let them know how they can help you. This gives them a chance to understand your feelings and find out more about your needs.

Tell them about this website if they would like to learn more about NETs, or direct them to other information they can read if they are interested.

When others can’t handle your diagnosis

Some people may not be able to cope or relate to what you’re saying about your NETs diagnosis. They may be uncomfortable about discussing your condition, and they may choose to avoid you.

Don’t allow yourself to be discouraged by such reactions – not everyone is comfortable talking openly about cancer. Some are unable to listen because of their own experiences or their own emotions, not yours.

Don’t let this become your problem. In some cases, they may not be the best ones to talk to at that point. Look for other friends and family who can handle your news better.

Sometimes, people who did not want to hear about your diagnosis at first might feel ready to discuss it at a later date. Try to be open about talking about your NETs when they’re ready.

Talking to children

Talking in an open, sensitive manner about your condition to your children or grandchildren can be beneficial. Many young children can sense when there is a problem in the family. If they sense that something is not right but cannot grasp why, they may start imagining the worst.

Have an honest conversation with children and teenagers using language they can understand. With very young children, you may want to use dolls or pictures to do this. Let them know about any changes in your health and what that could mean for them in their everyday life. Their reactions and needs will vary depending on their age.

Find the support you need

Learn about NETs

Learn about NETs

Learn about carcinoid tumors, the types of NETs, and symptoms.

Learn About NETs
Diagnosis and Testing

Diagnosing NETs

Find out how NETs are diagnosed and the tools doctors may use to help.


Advocacy & Support

Living with NETs is not something that you have to do alone. Find help and support.

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