What is a carcinoid tumor?
Cancer is made of changed cells that grow out of control. The changed or abnormal cells often grow to form a lump or mass called a tumor. Cancer cells can also grow into (invade) nearby areas. And they can spread to other parts of the body. This is called metastasis.
Carcinoid tumor is a rare type of tumor that often grows slowly.
Carcinoid tumors are cancer. But you may have a carcinoid tumor for many years and never know it. That’s because in many cases there are no symptoms. In rare cases, a carcinoid tumor can cause symptoms called carcinoid syndrome. This often occurs after a carcinoid tumor has spread.
Fewer than 10% of people with carcinoid tumors have or develop symptoms. That statistic may vary, based on the location of the tumor.
You may also increase your risk of getting this tumor by smoking.
Carcinoid tumors can grow anywhere in your body where hormone-producing cells are present. Hormones are your body's chemical messengers that travel through your blood. Most carcinoid tumors form in the digestive (gastrointestinal) tract.
Here are the areas of the body where carcinoid tumors are usually found:
- Small intestine
Carcinoid tumors behave differently depending on how quickly they grow, if they spread to other areas of your body, and if they make too much hormone. Types of carcinoid tumors include:
- Slow-growing tumors. These tumors are the most common type. They often remain small, less than about an inch wide. They don’t grow quickly or spread to other areas of the body.
- Faster-growing tumors. These tumors may grow more rapidly, grow larger, and spread.
- Hormone-secreting tumors. These functioning carcinoid tumors produce hormones including serotonin. The effect of serotonin and other hormones causes the symptoms known as carcinoid syndrome.
Who is at risk for a carcinoid tumor?
A risk factor is anything that may increase your chance of having a disease. The exact cause of someone’s cancer may not be known. But risk factors can make it more likely for a person to have cancer. Some risk factors may not be in your control. But others may be things you can change.
The risk factors for carcinoid tumor include:
- Family history. A family history of multiple endocrine neoplasia type 1 (MEN1) increases the risk of having carcinoid tumor develop.
- Race and gender. Black people tend to develop more GI carcinoid tumors than white people, and black men have a higher risk than black women. Among white people, men and women have the same risk.
- Additional health conditions. People with diseases that damage the stomach and reduce acid production have a greater risk of developing these tumors. People with pernicious anemia also have a higher risk of developing GI carcinoid tumors
- Age. People age 55-65 are the average age for GI carcinoid tumors. Lung carcinoid tumors tend to occur between ages 45 and 55. Children rarely develop carcinoid tumors.
- Smoking. The use of tobacco products increases the risk of carcinoid tumor.
Talk with your healthcare provider about your risk factors for carcinoid tumor and what you can do about them.
What are the symptoms of a carcinoid tumor?
Symptoms of a carcinoid tumor depend on where the tumor is growing and if the tumor is producing hormones and other chemicals (carcinoid syndrome). Symptoms of carcinoid syndrome include skin that gets red (flushing), cramps, and diarrhea. Over a period of time, some people may develop right-sided valvular heart disease.
If you have a tumor that is not causing carcinoid syndrome, you may have no symptoms at all. Your tumor may be found during a routine exam.
Symptoms of tumors that don’t cause carcinoid syndrome may include:
- Belly (abdominal) pain or pressure
- Change in bowel habits
- Blood in a bowel movement
- Chest pain
- Blood-tinged mucus (sputum)
- Weight loss
Symptoms caused by carcinoid syndrome may be triggered by exercise, stress, and some foods or drinks, such as alcohol (especially red wine), chocolate, and certain cheeses. These are common symptoms:
- Your face gets red (flushed)
- Fast heart rate (palpitations)
Many of these may be caused by other health problems. But it is important to see a healthcare provider if you have these symptoms. Only a healthcare provider can tell if you have cancer.
How is a carcinoid tumor diagnosed?
Diagnosing a small carcinoid tumor that’s not causing carcinoid syndrome symptoms is difficult. These tumors are often found when doing surgery or in an exam for another condition. For example, some carcinoid tumors are found when a healthcare provider removes an appendix for appendicitis.
These tests may be used to help diagnose carcinoid tumor:
- X-rays and scans. Chest X-ray, CT scan, and MRI scan are all useful in diagnosis.
- OctreoScan. This is a special type of scan that is most often used to find carcinoid tumors. This scan is taken after injection of a radioactive substance that is picked up by carcinoid tumor cells.
- Exam and biopsy. A surgical procedure to test a sample of tissue from the carcinoid tumor and look at it under a microscope is important for diagnosis. Sometimes this is done by using a flexible scope to look inside your body. This procedure is called endoscopy. If a tumor is found, your healthcare provider may take a sample of the tissue for biopsy.
- Urine test. If you have a carcinoid tumor that is making too much hormone, it may show up as a type of acid in your urine called 5-HIAA (5-hydroxy indole acetic acid). This is a waste product of serotonin.
- Blood test. A blood test may show an increased level of the hormone serotonin or high levels of chromogranin A (CgA). This is another substance made by most carcinoid tumors.
After a diagnosis of carcinoid tumor, you’ll likely need more tests. These help your healthcare providers learn more about the cancer. They can help show if the cancer has grown into nearby areas or spread to other parts of your body. The test results help your healthcare providers decide the best ways to treat the cancer.
The stage of a cancer tells your doctor how much and how far it has spread in your body. The stage of a cancer is one of the most important things to know when deciding how to treat it.
Stage groupings can have a value of 1 to 4 and they're written as Roman numerals I, II, II, and IV. The higher the number, the more advanced the cancer is. Letters and numbers can be used after the Roman numeral to give more details.
Your healthcare provider will talk with you about what your cancer stage means for your treatment. Make sure to ask any questions or talk about your concerns.
How is a carcinoid tumor treated?
The best treatment for small carcinoid tumors that have not spread is surgery. Surgery for these tumors can cure them. Once a tumor has spread or become too big to remove, other treatments may still work well. Here are some treatments that may be used:
- Partial surgery. If a tumor is too big to take out completely, surgery may be used to remove part of it so that other treatments may work better.
- Chemotherapy. Medicines that fight carcinoid tumor cells may be given into your bloodstream or taken by mouth. Often it is best to give several of these medicines in combination.
- Octreotide. This is a medicine that is given by injection. This medicine helps control the symptoms of carcinoid tumor. It may also block or reverse tumor growth.
- Liver treatment. If a carcinoid tumor has spread into your liver, chemotherapy medicines may be injected into your liver. Or small pellets may be injected that block blood flow to the tumor cells.
Talk with your healthcare providers about your treatment options. Make a list of questions. Think about the benefits and possible side effects of each option. Discuss your concerns with your healthcare provider before making a decision.
You may also want to get a second opinion before starting treatment. Some insurance companies need one for certain cancer diagnoses. In addition to providing more information, a second opinion can also give you peace of mind about your treatment decisions.
What can I do to prevent a carcinoid tumor?
Experts don't know how to prevent the growth of a carcinoid tumor. One risk factor that you can control is smoking. You may be able to lower your risk for carcinoid tumor by not smoking. Treating carcinoid tumor may help you prevent the symptoms of carcinoid syndrome.
How can I manage a carcinoid tumor?
In addition to following all your healthcare providers' instructions, taking your medicines, and keeping all your appointments, you can help manage carcinoid tumor by learning as much as you can about the disease and taking an active role in your treatment. Here are some other tips:
- Make sure you follow a nutritious, high-protein diet.
- Don’t take alcohol and foods that trigger carcinoid symptoms.
- Reduce stress as much as possible.
- Ask your healthcare provider about the medicines you take. Some medicines, such as decongestants, asthma inhalers, and antidepressants, may trigger or make carcinoid symptoms worse.
- Join a support group to learn more about carcinoid tumors and share your feeling with others.
- Try mind-body exercises such as yoga or tai chi to help reduce anxiety and stress.
- Try other ways of managing emotional stress: guided imagery, meditation, music therapy, and journaling.
- Before appointments, write down your questions and bring them with you. For support during your appointments, bring a family member or close friend with you.
Key points about carcinoid tumors
- A carcinoid tumor is a rare type of tumor that often grows slowly.
- Carcinoid tumors are cancer. But in many cases there are no symptoms.
- In rare cases, a carcinoid tumor can cause symptoms called carcinoid syndrome. This often happens after the tumor has spread.
- Carcinoid tumors can grow anywhere in your body where hormone-producing cells are present.
- The best treatment for small carcinoid tumors that have not spread is surgery.
Tips to help you get the most from a visit to your healthcare provider:
- Know the reason for your visit and what you want to happen.
- Before your visit, write down questions you want answered.
- Bring someone with you to help you ask questions and remember what your provider tells you.
- At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
- Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
- Ask if your condition can be treated in other ways.
- Know why a test or procedure is recommended and what the results could mean.
- Know what to expect if you do not take the medicine or have the test or procedure.
- If you have a follow-up appointment, write down the date, time, and purpose for that visit.
- Know how you can contact your provider if you have questions.