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Carcinoid Syndrome Facts and Fictions

1**My doctor will tell me if I have carcinoid syndrome.**Fiction**<p>Sometimes doctors refer to individual symptoms without calling it carcinoid syndrome. It is important to ask your doctor if the symptoms you are experiencing are carcinoid syndrome.</p>
2**If I have carcinoid syndrome, then I have a form of neuroendocrine cancer.**Fact**<p>Carcinoid syndrome is caused when too much serotonin is produced, among other hormones, by carcinoid tumors, and is also called neuroendocrine cancer. Too much serotonin in the body can lead to symptoms that can make it hard to live a normal life.</p>
3**My neuroendocrine tumor therapy may not get rid of carcinoid syndrome.**Fact**<p>Even if&nbsp;your cancer therapy reduces the size of your tumor, you still may experience carcinoid syndrome.</p>
4**My cancer therapy will get rid of my symptoms.**Fiction**<p>While treatments work to fight the cancer, symptoms may still continue. Patients with NETs and carcinoid syndrome may need to treat the tumor and syndrome separately.</p>
5**Carcinoid syndrome and carcinoid tumors are the same thing.**Fiction**<p>Carcinoid tumors are neuroendocrine tumors that can grow in the GI tract or lungs. Carcinoid syndrome is a group of symptoms that sometimes occurs in people as a result of carcinoid tumors.</p>
6**I don’t need to have my 5-HIAA levels checked again.**Fiction**<p>Monitoring your <span class="text-nowrap">5-HIAA</span> levels is an effective way to keep track of your disease. In fact, high <span class="text-nowrap">5-HIAA</span> levels are a sign of worsening disease, whether or not you feel sick. If you haven&rsquo;t had your levels checked in a while, you should speak to your doctor about taking a urine or plasma test.</p>
7**If I don’t have any outward symptoms of carcinoid syndrome, I can still be at risk for carcinoid heart disease.**Fact**<p>Anyone with a carcinoid tumor is at risk for carcinoid heart disease. In fact, a study showed that up to 20% of patients with carcinoid syndrome have carcinoid heart disease at diagnosis. It is important to keep carcinoid heart disease top-of-mind when discussing your condition with your doctor.</p>
8**Peptide receptor radionuclide therapy (PRRT) can cure my cancer.**Fiction**<p>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&rsquo;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 physician.</p>