Tips for Living With Carcinoid Syndrome

Tips for Living With Carcinoid Syndrome

“I hope to feel better and start living again.”

Patient with carcinoid syndrome

Just because you have carcinoid syndrome doesn’t mean you have to settle for a lower quality of life. There are a few ways to help improve your lifestyle. The most important thing to do is communicate with your healthcare team. Most doctors are confident and strive to help patients manage their symptoms, but they need to be made aware of them in order to do so. Some key points you should communicate to your healthcare team are:

  • ANY symptoms you are experiencing
  • How much of an impact carcinoid syndrome has on your daily life
  • Your hopes for improvement with symptom control

Better symptom control starts with an honest conversation between you and your healthcare team.

Know the 5 Es

The 5 Es are common triggers for carcinoid syndrome. By being aware of these triggers, you may be able to avoid symptoms. Everyone’s triggers can be different. It is important to monitor your carcinoid syndrome and discuss with your healthcare team the best ways to prevent carcinoid crisis.


THE 5 Es


EPINEPHRINE

Adrenaline is a hormone secreted by the adrenal glands. The synthetic form of adrenaline (epinephrine) is commonly found in allergy and cold medicine. Epinephrine can be one of the worst triggers for carcinoid syndrome. It is also found in Novocain used in dentists’ offices. If you have a medical ID, be sure it says no EPI.


eating

Certain foods can trigger symptoms. Your healthcare team can help you plan a diet that is nutritious without causing symptoms.


emotions

Stress and emotional swings can trigger carcinoid symptoms. Working with your healthcare team to limit stress can improve your overall mental, emotional, and physical health.


EXERCISE

While exercise is essential to maintain your health, it can also be a trigger for symptoms. Speak with your doctor about how to work exercise into your life without triggering symptoms.


ethanol (alcohol)

Many patients find that alcohol is difficult to tolerate. It is key to monitor your intake and do what works best for you.


Frequent triggers can also be a sign that your syndrome needs more control. Talk with your healthcare team to see what works best for you.