Check Your Knowledge

1**NETs and Carcinoid Syndrome are easy to diagnose.**Fiction**Sometimes doctors may identify individual symptoms without realizing their underlying cause. It is important to ask your doctor if the symptoms you are experiencing are Carcinoid Syndrome.

2**If I have Carcinoid Syndrome, then I have a form of neuroendocrine cancer.**Fact**Carcinoid Syndrome is caused when too much serotonin is produced by, among other things, carcinoid tumors (neuroendocrine cancer). Too much serotonin in the body can lead to symptoms that can make it hard to live a normal life.

3**My neuroendocrine tumor therapy may not relieve my Carcinoid Syndrome.**Fact**Even while your cancer therapy reduces the size of the tumor, you still may experience Carcinoid Syndrome symptoms. Patients with NETs and Carcinoid Syndrome may need to treat the tumor and syndrome separately.

4**Carcinoid Syndrome and carcinoid tumors are the same thing.**Fiction**Carcinoid tumors are neuroendocrine tumors that grow in the GI tract or lungs. Carcinoid Syndrome is a group of symptoms that sometimes occurs in people with carcinoid tumors.

5**I don’t need to have my serotonin levels checked routinely.**Fiction**Monitoring your serotonin is an effective way to keep track of your disease. In fact, high serotonin is a sign of worsening disease, whether or not you feel sick. If you haven’t had your levels checked in a while, you should speak to your doctor about taking a urine or plasma blood test.

6**Having a neuroendocrine tumor puts me at risk for developing carcinoid heart disease.**Fact**Anyone with a neuroendocrine tumor is at risk for carcinoid heart disease. In fact, up to 50% of patients with Carcinoid Syndrome may develop carcinoid heart disease. Up to 20% of people with Carcinoid Syndrome already have carcinoid heart disease at diagnosis. It is important to keep carcinoid heart disease top of mind when discussing your condition with your doctor.

7**Peptide receptor radionuclide therapy (PRRT) can cure my cancer.**Fiction**While PRRT is one way to treat a neuroendocrine tumor, there are also many other ways. It depends on the location of your tumor, its size, and what your doctor recommends. Remember, PRRT side effects may include severe nausea and lower blood cell counts. It’s important to understand how your syndrome will be managed and that every treatment has its pros and cons. Discuss which is best for you with your doctor.

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