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Living With Carcinoid Syndrome


What Can You Do to Live With Carcinoid Syndrome?

Like all cancer, carcinoid tumors can change your life. When you are diagnosed with carcinoid syndrome, you learn that the cause of your symptoms is a rare type of tumor called a carcinoid tumor, or NET. It is normal to feel confused, overwhelmed, afraid, and even angry. Your family and friends may feel the same way, too.

Remember, it's important to learn how to live with your disease. Understanding your condition may help you live as comfortably as possible.

Engage your health care team

Knowing whom to go to can help you better navigate your journey. If you or a loved one has been diagnosed with carcinoid syndrome, you will likely have multiple health care professionals available to help you along the way. Some health care professionals who may be part of your health care team include the following:

  • Oncologist

  • Gastroenterologist

  • Surgeon

  • Nurse

  • Nutritionist

  • Psychologist/social worker

Maintain a healthy lifestyle

Your doctor may suggest some things you can do to help make living with carcinoid syndrome as comfortable as possible.

  • Adjust your diet: Eating small meals and avoiding certain foods may help reduce symptoms

  • Light exercise: Mild activity, such as walking, is best and can help reduce stress

  • Get a good night's sleep: Get plenty of sleep and take naps when you can

  • Avoid stress: Make time for yourself to do things you enjoy and keep a positive attitude

Continue your daily routine 

Your family members and caregivers will be there for you throughout this journey. Don't be afraid to ask them for help. They can help you with daily activities and also help you cope with your feelings. They understand that the most important thing is for them to be there for you.

Your loved ones can help:

  • Provide emotional support

  • Take notes and ask questions at your doctor appointments

  • Keep track of your appointments and paperwork

  • Drive you to your appointments

  • Prepare meals and do the grocery shopping

Let the people in your life know how you feel and what you are going through. Asking them to be more involved can help you continue your regular routines.

Build a support network

In addition to your family, friends, and caregivers, there are other people like you and groups who want to help. There are patient groups for people with all types of NET. These groups work to improve the lives of people living with NET through support, awareness, education, research, and advocacy.

Building a support network is a great way to learn about your carcinoid syndrome and get more engaged with your treatment.

You should ask your doctor or nurse for more information about groups in your area.

For nutrition tips and educational resources, including information on NET Fusion, visit the Carcinoid Connection Facebook page. It is important to remember that the information obtained through this program is not intended to replace the advice and guidance of your health care team.

Learn about a patient’s journey

Hear about one patient’s experiences living with carcinoid syndrome.


Learn about a patient’s journey

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