NETs Versus Carcinoid Syndrome

NETs Versus Carcinoid Syndrome

Having Carcinoid Syndrome means that you have more to manage each day. That’s why it’s important to understand that the symptoms you experience when you have NETs may be due to Carcinoid Syndrome.

When you have Carcinoid Syndrome, it’s important to speak up and address your symptoms when developing a treatment plan with your healthcare team.

Learning the difference between NETs and Carcinoid Syndrome can help you have an informed discussion at your next appointment. For example, it may be helpful to know that:

  • Treating NETs does not necessarily treat Carcinoid Syndrome.
  • Carcinoid Syndrome may be worsening even if you have a stable tumor

The table below highlights what NETs and Carcinoid Syndrome have in common and what makes them different. Take a few minutes to read through this information. If you haven’t discussed Carcinoid Syndrome with your doctor yet, be sure to bring it up at your next appointment.

Neuroendocrine Tumors Carcinoid Syndrome
A group of tumors that include carcinoid tumors and some pancreatic tumors. Can be caused by some neuroendocrine tumors. Not everyone with neuroendocrine tumors will have Carcinoid Syndrome.
Can be functioning or nonfunctioning. Each type of functioning neuroendocrine tumor produces distinct hormones that can cause various symptoms and syndromes. Can occur when functioning neuroendocrine tumors release too much serotonin.
If your neuroendocrine tumor is causing you to have symptoms, then certain tests can measure levels of different hormones. If you have Carcinoid Syndrome, then you may have high levels of serotonin and 5-HIAA, which is produced by the breakdown of serotonin in your body.
Functioning neuroendocrine tumors may have different symptoms. Symptoms of Carcinoid Syndrome include diarrhea, flushing, wheezing, and scarring of the heart or lung tissue known as tissue fibrosis.