Get access to the resources, support, and information you need.
Diagnosing Carcinoid Syndrome
Metastatic carcinoid tumors are difficult to diagnose. They can be active or inactive. An active metastatic carcinoid tumor can release hormones into the body, resulting in the symptoms of carcinoid syndrome, such as severe diarrhea and flushing. If the metastatic carcinoid tumors are inactive, they may not produce any of these symptoms at all, making them difficult to detect. The increase in these hormones is what causes the symptoms associated with carcinoid syndrome.
Once your health care provider has determined that you may have carcinoid syndrome, he or she will perform tests that will help confirm your diagnosis. One test is called a 5-hydroxyindoleacetic acid (5-HIAA) test. It is a urine test that measures the amount of 5-HIAA, a product of the breakdown of serotonin, a hormone that causes symptoms of carcinoid syndrome. This test is very helpful because most patients with carcinoid syndrome overproduce serotonin and its metabolite, 5-HIAA.
Before Getting Tested for 5-HIAA
Before you take this test, there are some foods you should not eat because they can affect the results. Your health care provider will tell you about them, but here is a reminder:
There are also certain medications that can affect your 5-HIAA test, such as:
- Acetaminophen (such as Tylenol®)
- Salicylates (aspirin)
- Guaifenesin (found in some cough medicines)
- L-dopa (used to treat Parkinson disease)
Please consult your physician before taking the 5-HIAA test.
Tylenol is a registered trademark of McNeil Consumer Products Company.
Treatment and Monitoring of Severe Diarrhea and Flushing Associated With Metastatic Carcinoid Tumors
Management of carcinoid syndrome depends on getting an early diagnosis, proper monitoring, and treatment. Your doctor will discuss the best treatment for you and will help you set up an easy-to-follow treatment plan.
Medical Therapy for Carcinoid Syndrome
Most patients with carcinoid syndrome are diagnosed after they have already started experiencing symptoms like severe diarrhea and flushing. Relieving these symptoms is the primary goal of treatment.
There is medical therapy available to help you control the severe diarrhea and flushing associated with metastatic carcinoid tumors (carcinoid syndrome). Antidiarrheal medications do not always work to control the severe diarrhea associated with carcinoid syndrome. Your doctor will discuss the best treatment for you and help you set up a treatment plan. It is important that you speak to your doctor about starting treatment at the first sign of symptoms.
Be sure to speak with your health care provider about any questions or concerns you may have regarding your therapy. If any symptoms develop, call your health care provider immediately.
Sandostatin® (octreotide acetate) is a somatostatin analogue, which is a type of medicine that works directly at the site of the metastatic carcinoid tumors to help decrease the production of hormones that lead to the severe diarrhea and flushing of carcinoid syndrome. It is the first US Food and Drug Administration (FDA)-approved medical treatment for the control of the severe diarrhea and flushing associated with carcinoid syndrome.
Find simple tips and strategies to help you develop carcinoid-friendly eating habits.