A carcinoid tumor starts in the hormone-producing cells of various organs, primarily the gastrointestinal tract (such as the stomach and intestines) and lungs, but also the pancreas, testicles (in males) or ovaries (in females). Multiple carcinoid tumors can occur within the same organ. The cause of a carcinoid tumor is unknown.

A carcinoid tumor is classified as a neuroendocrine tumor which means it starts in cells of the neuroendocrine system, the cells that produce hormones. Carcinoid tumors can produce high levels of neuropeptides and amines (hormone-like substances); however, they may not be released in high enough quantities to cause symptoms or these may be defective and, therefore, not produce symptoms. A carcinoid tumor can grow slowly for many years without causing symptoms. Although this tumor is malignant (cancerous), a carcinoid tumor is often referred to as "cancer in slow motion."

Here is a general overview of where carcinoid tumors begin:

• 39% occur in the small intestine
• 
  
  
• 15% occur in the rectum
• 
  
  
• 10% occur in the bronchial system of the lungs
• 
  
  
• 7% occur in the appendix
• 
  
  
• 5% to 7% occur in the colon
• 
  
  
• 2% to 4% occur in the stomach
• 
  
  
• 2% to 3% occur in the pancreas
• 
  
  
• About 1% occur in the liver
• 
  
  
• Rarely in ovaries, testicles, and other organs

Carcinoid tumors make up only 1% of cancers of the gastrointestinal tract, but make up about 50% of all small intestine cancers.

Specifically regarding the lung, there are two subtypes of lung carcinoid tumors: typical and atypical. The difference relates to how a tumor processes and makes serotonin (5-HT, a neurotransmitter involved in behavior and depression):

• A typical lung carcinoid tumor has a high blood concentration of serotonin, chromogranin-A, and high urine levels of 5-HIAA (a product of serotonin breakdown).
• 
  
  
• An atypical lung carcinoid tumor has a normal blood concentration of serotonin, chromogranin-A, and normal urine levels of 5-HIAA, but a high urine concentration of serotonin and 5-HTP (an amino acid) and can produce 5-HTP.

Statistics

It is estimated that 11,000 to 12,000 people are diagnosed with a carcinoid tumor each year in the United States. The number of carcinoid tumors diagnosed has been increasing, but the reason for this is unknown.

About two thirds of all carcinoid tumors occur in the gastrointestinal tract. The overall relative survival rate (the percentage of patients who survive after the cancer is detected, excluding those who die from other diseases) for patients with gastrointestinal carcinoid tumors (tumors that have not spread) is 67%.

Each year, an estimated 1,700 adults in the United States will be diagnosed with lung carcinoid tumors. The five-year relative survival rate of patients with typical lung carcinoids is 95%. Those diagnosed with atypical lung carcinoid tumors have a five-year relative survival rate of 70%. The overall five-year relative survival rate for localized lung carcinoid tumors is 80%. The overall five-year relative survival rate for lung carcinoid tumors with regional and distant spread are 77% and 26%, respectively.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of cases of this type of cancer in the United States and may not apply to a single person. It is not possible to tell a person how long he or she will live with carcinoid tumors. Because survival statistics are measured in five-year (or sometimes one-year) intervals, they may not represent advances made in the treatment or diagnosis of this cancer.

Source: American Cancer Society

To learn about the cancer terms used in this section, read the Cancer.Net Feature: Cancer Terms to Know: Basic Oncology Terms.

Larger image

A risk factor is anything that increases a person's chance of developing cancer. There are risk factors that can be controlled, such as smoking, and risk factors that cannot be controlled, such as age and family history. Although risk factors can promote the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. However, knowing your risk factors and communicating them to your doctor may help you make more informed lifestyle and health-care choices.

The cause of carcinoid tumors is unknown, and no avoidable risk factors have been identified. Lung carcinoid tumors are not caused by or related to smoking.

The following factors can raise a person's risk of developing a carcinoid tumor:

Family history of multiple endocrine neoplasia, type 1. Multiple endocrine neoplasia, type 1 (MEN1) is a hereditary condition that increases the risk of developing tumors in three different glands: pituitary, parathyroid, and pancreas. It is estimated that approximately 10% of gastrointestinal carcinoid tumors are associated with MEN1. For more information, read the Cancer.Net Guide to Multiple Endocrine Neoplasia, Type 1.

Race and gender. Gastrointestinal carcinoid tumors are more common among black people than white people, and black men are at a higher risk than black women. Among white people, men and women have the same risk. Race and gender are not a significant risk factor in lung carcinoid tumors, but women tend to live longer after treatment.

Age. For gastrointestinal carcinoid tumors, the average age at diagnosis is 55 to 65. For carcinoid tumors of the appendix, the average age at diagnosis is about 40. For lung carcinoid tumors, the average age at diagnosis is between 45 and 55. Children rarely develop carcinoid tumors.

Other stomach conditions. People with diseases that damage the stomach and reduce acid production have a greater risk of developing a stomach carcinoid tumor. In particular, people with pernicious anemia, a type of anemia characterized by very large, malformed red blood cells, have a higher risk of a stomach carcinoid tumor.

A carcinoid tumor often causes no symptoms in its early stages and is often found unexpectedly by a surgeon during an unrelated surgery or on x-rays for another condition.

Often, symptoms of a gastrointestinal carcinoid tumor only appear if the tumor metastasizes (spreads) to the liver. In that case, the hormone-like substances from the tumor can circulate throughout the body and cause carcinoid syndrome (see below), a group of symptoms that occur in response to hormones being released by the tumor into the bloodstream. Intestinal carcinoid tumors are most likely to cause symptoms.

People with a gastrointestinal carcinoid tumor often experience the following symptoms. Sometimes, people with a gastrointestinal carcinoid tumor do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom on this list, please talk with your doctor.

• Facial flushing (redness and warm feeling over the face)
• 
  
  
• Diarrhea
• 
  
  
• Abdominal pain (caused by blockage of the intestines)
• 
  
  
• Asthma
• 
  
  
• Rash
• 
  
  
• Heart disease
• 
  
  
• Intestinal bleeding
• 
  
  
• Pellagra (scale-like skin sores, diarrhea, and mental disturbances)
• 
  
  
• Melena (dark, tarry stools that contain blood and usually indicate there is bleeding elsewhere in the gastrointestinal tract)

Carcinoid tumors in the lungs cause symptoms in response to hormones bypassing the liver and entering the bloodstream. A lung carcinoid tumor is far less likely to cause carcinoid syndrome (see below) than a gastrointestinal carcinoid tumor.

People with a lung carcinoid tumor often experience the following symptoms. Sometimes, people with lung carcinoid tumors do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom on this list, please talk with your doctor.

• Cough (with or without bloody sputum or phlegm)
• 
  
  
• Wheezing
• 
  
  
• Post-obstructive pneumonia (when a tumor blocking a large air passage causes an infection)

Carcinoid syndrome

Carcinoid syndrome is more common in people who have had a carcinoid tumor for many years. Approximately 60% of people with carcinoid tumors eventually develop carcinoid syndrome.

People with carcinoid syndrome often experience the following symptoms. Sometimes, people with carcinoid syndrome do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not carcinoid syndrome. If you are concerned about a symptom on this list, please talk with your doctor.

• Facial flushing
• 
  
  
• Sweating
• 
  
  
• Diarrhea
• 
  
  
• Shortness of breath
• 
  
  
• Wheezing or asthma-like symptoms
• 
  
  
• Fast heartbeat
• 
  
  
• Heart murmur
• 
  
  
• Weight gain
• 
  
  
• Weakness
• 
  
  
• Secondary diabetes
• 
  
  
• Increased body and facial hair
• 
  
  
• High blood pressure
• 
  
  
• Neurosis (a psychologic or behavioral disorder primarily characterized by anxiety) and psychosis (a severe emotional and behavioral disorder that can cause a person's mental capacity to become very distorted or disorganized, which may interfere with the person's ability to cope with the demands of everyday life)

Stress, strenuous exercise, and drinking alcohol may worsen these symptoms.

Carcinoid crisis

Carcinoid crisis is a term used when all of the symptoms of carcinoid syndrome occur at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome and is generally found in people who already experienced some symptoms of carcinoid syndrome. Carcinoid crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. A carcinoid crisis may be prevented and successfully treated with octreotide (Sandostatin), a medication that can help to raise low blood pressure and control the production of hormones.

Managing symptoms

Below are some common symptoms of a carcinoid tumor, followed by information on how each can be managed. Talk with your doctor about each symptom and how it can be treated. For more information on managing common cancer symptoms and treatment side effects, visit Cancer.Net's section on Managing Side Effects.

Facial flushing. Avoid stress. Ask your doctor about certain substances and foods, including alcohol, that cause facial flushing, and avoid them.

Wheezing. Ask your doctor about the use of a bronchodilator (medication that relaxes the muscles in the lungs to make breathing easier).

Diarrhea. Ask your doctor about the use of anti-diarrheal medications.

Carcinoid syndrome. Ask your doctor about the use of octreotide (the most effective single medication against carcinoid syndrome).

Heart problems. Tell your doctor immediately and ask about the use of diuretics (agents that increase the amount of urine; diuretics act by increasing function of the heart).

Doctors use many tests to diagnose cancer and determine if it has metastasized. Some tests may also determine which treatments may be the most effective. For most types of cancer, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the cancer has metastasized. Your doctor may consider these factors when choosing a diagnostic test:

• Age and medical condition
• The type of cancer
• Severity of symptoms
• Previous test results

Most carcinoid tumors are found incidentally when people are having x-rays or medical procedures done unrelated to the tumor. For example, many carcinoid tumors of the appendix are found during appendectomies (surgery to remove the appendix); duodenal (the top of the small intestine) and stomach carcinoid tumors are usually found during endoscopies (see below).

If a doctor suspects a carcinoid tumor is present, he or she will obtain a complete medical and family history. The doctor will also perform a thorough physical examination and may conduct other tests.

In addition to a physical examination, the following tests may be used to diagnose a carcinoid tumor:

Diagnostic Tests

Urine tests. Urine tests check the measurement of 5-HIAA. Measurements for serotonin levels may also be taken. A doctor may be able to diagnose a carcinoid tumor from a urine test alone.

Blood tests. A blood test to measure chromogranin-A may be ordered, since the serum serotonin level fluctuates and may not be as useful as a chromogranin-A test.

Surgical/Invasive

Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. The sample removed from the biopsy is analyzed by a pathologist (a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease).

Upper endoscopy. A thin, flexible tube with an attached light and camera is passed down the throat and into the esophagus, stomach, and first part of the small bowel. This test allows the doctor to see the lining of the upper section of the digestive system. If an abnormality is noted, a biopsy will be performed.

A colonoscope is a type of endoscope that is inserted through the anus into the colon. It can be used to diagnose tumors in the lower section of the digestive system.

Endoscopic ultrasound. This procedure is often done at the same time as the upper endoscopy. In an ultrasound, sound waves provide a picture of structures inside the body. In an endoscopic ultrasound, a transducer (a machine that produces the sound waves) is inserted into the upper digestive tract through the mouth. The endoscopic ultrasound can show enlarged lymph nodes, which may indicate a tumor or advanced disease.

Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient's vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

Imaging

X-ray An x-ray is a picture of the inside of the body. For instance, a chest x-ray may be taken to look for a carcinoid tumor in the lungs. Some carcinoid tumors may not show up on a chest x-ray due to their size or location, so the doctor may also order a computed tomography (CT or CAT) scan.

Barium x-rays. In a barium swallow, a person swallows a liquid containing barium and then a series of x-rays are taken. The barium coats the lining of the esophagus, stomach, and intestines, so abnormalities are easier to see on the x-ray. If there is an abnormality, an endoscopy biopsy can help make the diagnosis of cancer.

A barium enema may be given before x-rays are taken to show the inner surface of the large intestine. During this test, a barium solution is given through the anus and flows throughout the colon, then the x-rays are taken.

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan is used to detect liver metastasis and a carcinoid tumor in the retroperitoneal (the area behind the abdomen) lymph nodes.

Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body.

Radionuclide scanning (OctreoScan). A small amount of a radioactive hormone-like substance that is attracted to carcinoid tumors is injected into a patient's vein. A special camera is then used to show where the radioactivity accumulates. This procedure is useful in detecting spread of a carcinoid tumor, especially to the liver.

Positron emission tomography (PET) scan. In a PET scan, radioactive sugar molecules are injected into the body. Cancer cells absorb sugar more quickly than normal cells, so they light up on the PET scan. PET scans are often used to complement information gathered from CT scan, MRI, and physical examination. Because carcinoid tumors grow very slowly, PET scans may not be as helpful in diagnosis.

To learn about the terms used in this section, read the cancer.Net Feature: Cancer Terms to Know: Newly Diagnosed.

To learn more about what to expect during common diagnostic tests, read Cancer.Net: Tests and Procedures.

Staging is a way of describing a cancer, such as where it is located, if or where it has spread, and if it is affecting the functions of other organs in the body. Doctors use diagnostic tests to determine the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis (chance of recovery). There are different stage descriptions for different types of cancer.

Gastrointestinal carcinoid tumor

There is no standard system for staging a gastrointestinal carcinoid tumor. Some doctors use the same system that is used for other cancers of the same organ. For example, a stomach carcinoid tumor may be treated similar to stomach cancer.

Because there is no standard system, many doctors classify each gastrointestinal carcinoid tumor into one of three general stages:

Localized spread. The carcinoid tumor has not spread beyond the wall of the primary organ, such as the stomach, colon, or intestine.

Regional spread. The carcinoid tumor has spread through the wall of the primary organ and involves nearby tissues, such as fat, muscle, or lymph nodes.

Distant spread. The carcinoid tumor has spread to tissues or organs far away from the primary organ, such as the liver, bones, or lungs.

Lung carcinoid tumor

The staging of a lung carcinoid tumor is the same as the staging of non-small cell lung cancer (NSCLC). For more information, read the staging section of Cancer.Net's Guide to Lung Cancer.

The treatment of a carcinoid tumor depends on the size and location of the tumor, whether the cancer has spread, and the patient's overall health. In many cases, a team of doctors will work with the patient to determine the best treatment plan.

Surgery

Many carcinoid tumors are treated with surgery alone. Complete removal of the entire tumor is the standard treatment when possible. Often, the surgeon will remove some normal tissue around the tumor in hopes of leaving negative margins (no trace of cancer in the healthy tissue). When a complete removal of the tumor is not possible, debulking surgery is often used. Debulking surgery removes as much of the tumor as possible and may provide some relief of symptoms.

Surgery for a gastrointestinal carcinoid tumor

Local excision. During this operation, the surgeon removes the primary tumor and a margin of tissue around the primary location. Most localized tumors can be surgically removed through a skin incision, but a rectal carcinoid tumor may be removed through the anus. Other gastrointestinal carcinoid tumors can sometimes be removed using an endoscope (see Diagnosis).

Electro-fulguration (radiofrequency ablation, RFA). Sometimes used for rectal carcinoid tumors, this treatment destroys the tumor by heating it with an electric current.

Segmental colon resection or hemicolectomy. During this surgery, one-third to one-half of the colon, as well as nearby blood vessels and lymph nodes, are removed.

Low anterior resection. During this surgery, a portion of the upper part of the rectum is removed.

Abdominoperineal resection. This surgery is used for larger tumors in the lower part of the rectum. After surgery, a colostomy (an opening from the colon to the outside of the body) may be used to carry urine and other waste outside of the body.

Liver resection. This surgery removes areas of metastases from the liver. It is not expected to cure cancer, but it is often helpful in relieving or reducing the symptoms of carcinoid syndrome.

Liver transplantation. Liver transplantation is rarely used in the treatment of carcinoid tumors, but it may help younger patients with carcinoid tumors that begin in the liver.

Procedures to treat liver metastases

Intratumoral ethanol injection. A CT scan is used to guide a needle into the areas of tumor spread, which are then destroyed by injecting concentrated alcohol through the needle. Liquid nitrogen can also be used to cool the needle and kill the cells by freezing. These methods are particularly useful if surgical procedures are difficult or not possible to perform.

Hepatic artery occlusion or embolization. Generally used for patients with liver metastases, these procedures block the tumor's blood supply by sealing off the blood vessels leading to the tumor. The effectiveness of chemotherapy combined with hepatic artery embolization is not yet clear and continues to be studied.

Surgery for a lung carcinoid tumor

Sleeve resection. The tumor is surgically removed along with parts of the airway above and below the tumor. The airway is then reconnected.

Lobectomy. During this surgery, an entire lobe of a lung is removed. This surgery is often used if a sleeve resection is not possible due to the size and location of a tumor. A lobectomy is also used if a carcinoid tumor is found at the edge of the lungs away from large airways.

Wedge resection. During this surgery, a small, wedge-shaped piece of the lung is removed. This surgery is used if the tumor is very small.

Pneumonectomy. During this surgery, an entire lung is removed.

Lymph node dissection. Removal of the lymph nodes near the lungs is also common during surgery for a lung carcinoid tumor. Removing the lymph nodes lowers the risk of the carcinoid tumor spreading to other organs.

For some people, such as those with lung diseases, heart disease, or other medical conditions, surgery cannot successfully treat the cancer. In these cases, palliative surgery to relieve symptoms can be helpful, such as removing most of the tumor through a bronchoscope or vaporizing most of it with a laser. Palliative surgery is often supplemented with radiation treatment. These treatments can help relieve symptoms caused by blocked airways.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to kill cancer cells. Radiation therapy may be given in two ways: externally and internally. External-beam radiation therapy is radiation given from a machine outside of the body. External-beam radiation therapy is the most common radiation treatment for carcinoid tumors, and is most often used to treat bone metastases in order to relieve symptoms. Internal radiation therapy, also called interstitial radiation therapy or brachytherapy, involves tiny pellets or rods containing radioactive materials that are surgically implanted in or near the site of the tumor. The implant is left in place for several days while the patient stays in the hospital.

Patients receiving radiation therapy may experience fatigue during the course of treatment, and the treated area may become red and dry. Radiation therapy to the chest and neck can cause a dry, sore throat, or a dry cough. Some patients experience shortness of breath during radiation therapy. Most side effects go away after the treatment is finished. Radiation therapy is not always effective in treating carcinoid tumors, but it may be useful for pain control.

Chemotherapy

Chemotherapy is the use of drugs to kill cancer cells. Systemic chemotherapy is delivered through the bloodstream, targeting cancer cells throughout the body. The side effects of chemotherapy depend on the individual and the dose used, but can include fatigue, risk of infection and bleeding, nausea and vomiting, loss of appetite, changes in smell or taste of food, and diarrhea. These side effects usually go away once treatment is finished.

Chemotherapy for a carcinoid tumor is most often used when the tumor has spread to other organs or is causing severe symptoms. This type of tumor rarely responds to chemotherapy alone, and other treatments may be necessary.

The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications you've been prescribed, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions through Cancer.Net's Drug Information Resources, which provides links to searchable drug databases.

Biologic and targeted therapy

Biologic therapy (also called immunotherapy) is designed to boost the body's immune system. It uses materials either made by the body or in a laboratory to boost immune function. Biologic therapies include alpha-interferon and octreotide, may shrink a carcinoid tumor or stop its progression. These therapies work by altering the surface proteins of cancer cells and by slowing their growth. Biologic therapies are also used to treat symptoms by controlling the production of hormones. Targeted therapies are drugs designed to target various proteins that can contribute to cancer growth. Targeted therapies under investigation include drugs that interfere with new vessel formation or with specific survival pathways of cancer cells.

Treatment of a gastrointestinal carcinoid tumor by stage

Localized

Stomach. A localized carcinoid tumor of the stomach can often be completely removed through an endoscope. A tumor larger than 2 centimeters (cm) is removed with a margin of surrounding stomach tissue through an incision in the abdomen. For patients whose carcinoid tumor is stimulated by gastrin, a hormone released by cells of the antrum of the stomach (the part next to the small intestine), the removal of the antrum may be recommended.

Small intestine. Surgery to remove the tumor and surrounding tissue is the most common treatment for carcinoid tumors (smaller than 1 cm) in the small intestine. Surgery for larger tumors involves removing more surrounding tissue, as well as some surrounding blood vessels and lymph nodes.

Large intestine. The most common treatment for tumors smaller than 2 cm is the surgical removal of the tumor and surrounding tissue, often done through a colonoscope. If the tumor is larger than 2 cm, surgery most often involves an incision through the skin.

Appendix. An appendectomy (removal of the appendix) is usually the only treatment needed for carcinoid tumors smaller than 1.5 cm. For tumors larger than 2 cm, the removal of about one-third of the colon next to the appendix, along with nearby blood vessels and lymph nodes, is often needed.

Rectum. A rectal carcinoid tumor smaller than 1 cm is treated with electro-fulguration (a procedure that destroys the tumor by heating it with an electric current). Tumors larger than 2 cm have a high risk of aggressive growth and spread, so they are removed using the same procedure as rectal cancer, where some of the healthy tissue of the colon or rectum and some of the nearby lymph nodes are removed.

Regional spread

When possible, the primary tumor and areas of spread to adjacent tissues and lymph nodes are removed during surgery. If this is not possible, surgery can help relieve symptoms, such as intestinal blockage.

Distant spread

Surgery is used to relieve symptoms, as it is not a curative therapy at this stage. If distant metastases are not causing symptoms, surgery may not be needed. If carcinoid syndrome is causing symptoms, surgery to remove as much cancer as possible is often recommended. Chemotherapy may also be offered to help relieve symptoms.

To learn about the terms used in this section, read the Cancer.Net Feature: Cancer Terms to Know: During Treatment.

Doctors and scientists are always looking for better ways to treat patients with a carcinoid tumor. A clinical trial is a way to test a new treatment in order to prove that it is safe, effective, and possibly better than a standard treatment. Patients who participate in clinical trials are among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that finding new drugs and other therapies is the only way to make progress in treating a carcinoid tumor. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with a carcinoid tumor.

To join a clinical trial, patients must complete a learning process known as informed consent. During informed consent, the doctor should list all of the patient's options, so the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment. Learn more about clinical trials, including patient safety, phases of a clinical trial, deciding to participate in a clinical trial, questions to ask the research team, and links to find cancer clinical trials.

Cancer and cancer treatment can cause a variety of side effects; some are easily controlled, and others require specialized care. Below are some of the side effects that are more common to a carcinoid tumor and its treatments. For more detailed information on managing these and other side effects of cancer and cancer treatment, visit the Cancer.Net Managing Side Effects section.

Difficulty swallowing (dysphagia). Dysphagia occurs when a patient has trouble getting food or liquid to pass down the throat. Some patients may gag, cough, or choke when trying to swallow, while others experience pain or feel like food is stuck in the throat. Difficulty swallowing is a relatively common side effect of some cancer treatments. Potential side effects of cancer treatment that can cause swallowing difficulties include soreness, pain, or inflammation in the throat, esophagus, or mouth (mucositis); dry mouth from radiation treatment or chemotherapy; infections of the mouth or esophagus from radiation treatment or chemotherapy; swelling or constriction of the throat or esophagus from radiation treatment or surgery; and physical changes to the mouth, jaw, throat, or esophagus as a result of surgery.

Fatigue (tiredness). Fatigue is extreme exhaustion or tiredness and is the most common problem that people with cancer experience. More than half of patients experience fatigue during chemotherapy or radiation therapy, and up to 70% of patients with advanced cancer experience fatigue. Patients who feel fatigue often say that even a small effort, such as walking across a room, can seem like too much. Fatigue can seriously affect family and other daily activities, can make patients avoid or skip cancer treatments, and may even affect the will to live.

After treatment for a carcinoid tumor ends, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. Sometimes, a carcinoid tumor recurs (comes back after treatment), even several years after treatment. The most common place for a second carcinoid tumor is the gastrointestinal tract (stomach and intestines). Report any new symptoms to your doctor as soon as you notice them, such as fatigue, breathing problems, or pain in any part of the body. Patients and families should be aware that carcinoid tumors are slow-growing and may be similar to a chronic illness. Some patients also experience late effects after being treated with octreotide (Sandostatin), such as thyroid and gallbladder problems.

People recovering from a carcinoid tumor are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, eating a balanced diet, and having recommended cancer screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help you rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about Healthy Living After Cancer.

To learn about the terms used in this section, read the Cancer.Net Feature: Cancer Terms to Know: After Treatment.

Currently, many clinical trials for carcinoid tumors are being done with newer agents and combinations. The best source to look-up the trials that may be available in your area is www.clinicaltrials.gov.

Research for carcinoid tumors is ongoing. Advances may still be under investigation in clinical trials and may not be approved or available at this time. Always discuss all diagnostic and treatment options with your doctor.

Regular communication with your doctor is important in making informed decisions about your health care. Consider asking the following questions of your doctor:

• Where is the carcinoid tumor located?
  
  
• What is the stage of my cancer? What does this mean?
  
  
• Do I have carcinoid syndrome? What does this mean?
  
  
• Is my heart affected by the cancer? How will you monitor my heart's performance?
  
  
• What are my treatment options?
  
  
• Can surgery be done to remove all of my cancer? If not, can surgery be done to debulk my cancer? What advantages will this produce?
  
  
• What clinical trials are open to me?
  
  
• What are the new promising agents for carcinoid tumors?
  
  
• What new research is available for carcinoid tumors?
  
  
• What are the potential side effects of each treatment option?
  
  
• What treatment do you recommend?
  
  
• What is the goal of this treatment?
  
  
• What are the chances that the tumor will recur?
  
  
• What follow-up tests will I need, and how often will I need them?

The Carcinoid Cancer Foundation, Inc.
333 Mamaroneck Ave., #492
White Plains, NY  10605
Phone: 914-683-1001
Toll Free: 888-722-3132
www.carcinoid.org

Caring for Carcinoid Foundation
One Kendall Square, PMB 180
Cambridge, MA  02139
Phone: 857-222-5492
www.caringforcarcinoid.org

Rare Cancer Alliance
1649 N. Pacana Way
Green Valley, AZ 85614
www.rare-cancer.org

National Organization for Rare Disorders (NORD)
55 Kenosia Ave.
P.O. Box 1968
Danbury, CT  06813
Toll Free: 800-999-6673 (voicemail only)
Phone: 203-744-0100
www.rarediseases.org

View all of Cancer.Net's Patient Information Resources.