Lung carcinoid tumors (also known as lung carcinoids) are a type of lung cancer, which is a cancer that starts in the lungs. Cancer starts when cells begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Lung carcinoid tumors are uncommon and tend to grow slower than other types of lung cancers. They are made up of special kinds of cells called neuroendocrine cells.

To understand lung carcinoid tumors, it helps to know something about the normal structure and function of the lungs, as well as the neuroendocrine system.

The lungs

The lungs are 2 sponge-like organs in your chest. Your right lung has 3 sections, called lobes. The left lung has 2 lobes. It is smaller because the heart takes up room on that side of the body.

Many medical centers around the world are researching the causes and treatment of lung carcinoid tumors. This disease is challenging to study because it is not common. But each year, scientists find out more about what causes the disease and how to improve treatment.

Genetics

Researchers have made great progress in understanding how certain changes in the DNA inside normal cells can cause them to become cancerous. DNA is the molecule that carries the instructions for nearly everything our cells do. We usually look like our parents because they are the source of our DNA. But DNA affects more than how we look.

Some genes (parts of our DNA) contain instructions for controlling when our cells grow and divide into new cells. Certain genes that cause cells to grow, divide, and stay alive are called oncogenes. Others that slow down cell division or cause cells to die at the right time are called tumor suppressor genes. Cancers can be caused by DNA changes that turn on oncogenes or turn off tumor suppressor genes.

Researchers have found many DNA changes in lung carcinoid cells in the past few years. The hope is that continued research in understanding these changes will lead to new tests for earlier diagnosis and new drugs for more effective treatment.

Diagnosis

Because the outlook and treatment of lung carcinoids and other types of lung cancer are very different, it’s important to be able to tell these cancers apart as soon as possible. Researchers have made great progress in developing tests that can detect specific substances found in the cells of carcinoid tumors but not other lung cancers. Most of these tests treat tissue samples with special man-made antibodies in the lab. The antibodies are designed to recognize specific substances in certain types of tumors.

Treatment

Doctors are learning how to treat lung carcinoids more effectively. For example, newer surgical techniques allow doctors to remove parts of the lung through smaller incisions, which can result in shorter hospital stays and less pain for patients. And new radiation therapy techniques help doctors focus the radiation more precisely on tumors, lowering the amount of radiation that normal tissues get and reducing side effects.

Carcinoid tumors that have spread remain hard to treat. Most carcinoid tumors grow fairly slowly. Because standard chemotherapy drugs work by attacking quickly growing cells, they are not very effective against carcinoid tumors.

Newer drugs called targeted therapies may prove to be more effective against carcinoids. Targeted therapies attack the parts of cancer cells that make them different from normal, healthy cells. Each type of targeted therapy works differently, but they alter the way a cancer cell grows, divides, repairs itself, or interacts with other cells in some way.

Two targeted therapy drugs, sunitinib (Sutent^®) and everolimus (Afinitor^®), have been shown to be helpful in treating neuroendocrine tumors that start in the pancreas. Studies of these drugs in carcinoid tumors (which are a type of neuroendocrine tumor) are in progress.

Targeted drugs called angiogenesis inhibitors affect the growth of new blood vessels, which tumors need to grow larger. Some of these drugs are already used to treat other types of cancer and are now being studied for use against carcinoid tumors. Examples of these drugs include bevacizumab (Avastin^®), pazopanib (Votrient^®), axitinib (Inlyta^®), and cabozantinib (Cometriq^®).

Researchers are also trying to improve upon drugs related to somatostatin, which help some people with carcinoid tumors. An example is pasireotide (Signifor^®), which may prove to be more potent than current drugs such as octreotide and lanreotide. Another new approach is to pair drugs similar to octreotide with a radioactive atom. These drugs are like those used for some radionuclide scans, but the radiation is stronger. The drugs bind to the carcinoid cells, delivering radiation to those cells and limiting the effects on normal cells. In early studies, this type of treatment has helped some patients with advanced carcinoid tumors that were no longer responding to other treatments, but more studies of these new drugs are needed.

These and other new drugs are now being studied in clinical trials.

Certain signs and symptoms might suggest that a person could have a lung carcinoid tumor, but tests are needed to confirm the diagnosis.

Medical history and physical exam

If you have any signs or symptoms that suggest you might have a lung carcinoid tumor (or another type of lung tumor), your doctor will take a complete medical history, including your family history, to learn about your symptoms and possible risk factors.

A physical exam can give your doctor information about your general health, possible signs of lung carcinoid tumor, and other health problems. During your exam, your doctor will pay close attention to your chest and lungs.

If your symptoms or the results of the exam suggest you might have a lung carcinoid tumor (or another type of tumor), more tests will be done. These might include imaging tests, lab tests, and other procedures.

Imaging tests

Imaging tests use x-rays, radioactive particles, or other means to create pictures of the inside of your body. Imaging tests are done for a number of reasons, including to help find a suspicious area that might be cancer, to learn how far cancer may have spread, and to help determine if treatment has been effective.

Chest x-ray

A chest x-ray is often the first imaging test a doctor orders if a lung problem is suspected. It might be able to show if there is a tumor in the lung. But some carcinoids that are small or are in places where they are covered by other organs in the chest may not show up on a chest x-ray. If your doctor is still suspicious or if something is seen on the chest x-ray, a CT scan may be ordered.

Computed tomography (CT) scan

A CT (or CAT) scan is more likely to show small lung tumors than routine chest x-rays. A CT scan can also provide precise information about the size, shape, and position of any lung tumors and can help find enlarged lymph nodes that might contain cancer that has spread from the lung.

The CT scan uses x-rays to produce detailed cross-sectional images of your body. Instead of taking one picture, like a regular x-ray, a CT scanner takes many pictures as it rotates around you while you are lying on a narrow platform. A computer then combines these into images showing slices of the part of your body being studied.

Before any pictures are taken, you may be asked to drink 1 to 2 pints of a liquid called oral contrast. This helps outline the intestine so that certain areas are not mistaken for tumors. This is not needed if the CT scan is only looking at the chest and lungs. You may also receive an IV (intravenous) line through which a different kind of contrast dye (IV contrast) is injected. This helps better outline structures in your body. The injection can cause some flushing (redness and warm feeling). Some people are allergic and get hives or, rarely, more serious reactions like trouble breathing and low blood pressure. Be sure to tell the doctor if you have any allergies or have ever had a reaction to any contrast material used for x-rays.

A CT scanner has been described as a large donut, with a narrow table that slides in and out of the middle opening. You will need to lie still on the table while the scan is being done. CT scans take longer than regular x-rays, and you might feel a bit confined by the ring while the pictures are being taken.

CT scans can be used in several ways:

• To help determine the exact location and extent of the tumors.
• To stage a cancer (determining the extent of its spread). This can help to determine if surgery is a good treatment option.
• To guide a biopsy needle precisely into a suspected tumor. For this procedure, called a CT-guided needle biopsy, you stay on the CT scanning table while the doctor advances a biopsy needle through the skin and toward the mass. CT scans are repeated until the needle is within the mass. A biopsy sample is then removed and looked at under a microscope.
• To see how effective treatment has been.

Radionuclide scans

Scans using small amounts of radioactivity and special cameras may be helpful in looking for carcinoid tumors. They can help find tumors or look for areas of cancer spread if doctors aren’t sure where they are in the body.

Somatostatin receptor scintigraphy: The most common scan is somatostatin receptor scintigraphy (SRS), also known as the OctreoScan. It uses a drug called octreotide bound to radioactive indium-111. Octreotide is a hormone-like substance that attaches to carcinoid cells. A small amount is injected into a vein. It travels through the blood and is attracted to carcinoid tumors. A few hours after the injection, a special camera can be used to show where the radioactivity has collected in the body. More scans may be done in the following few days as well. Along with showing where tumors are, this test can help tell whether treatment with certain drugs such as octreotide and lanreotide is likely to be helpful.

I-131 MIBG scan: This test is used less often. It uses a chemical called MIBG attached to radioactive iodine (I-131). This substance is injected into a vein, and the body is scanned several hours or days later with a special camera to look for areas that picked up the radioactivity. These would most likely be carcinoid tumors, but other kinds of neuroendocrine tumors will also pick up this chemical.

Positron emission tomography (PET) scan: For most types of cancer, PET scans use a form of radioactive glucose (sugar) to find tumors. But this type of PET scan is not very useful in finding carcinoid tumors. Instead, PET scanning for carcinoid tumors usually uses a radioactive form of 5-hydroxytryptophan, a chemical that is taken up and used by carcinoid cells. A special camera can detect the radioactivity. The usefulness of this test for lung carcinoid tumors is still being studied. This special type of PET scan is not available in every hospital.

Sputum cytology

Even if an imaging test such as a chest x-ray or CT scan shows a mass, it’s often hard for doctors to tell if the mass is a carcinoid tumor, another type of lung cancer, or an area of infection. Tests may be needed to get a sample of the abnormal cells to be looked at under a microscope.

One way to do this is called sputum cytology. A sample of sputum (mucus you cough up from the lungs) is looked at under a microscope to see if it contains cancer cells. The best way to do this is to get samples taken early in the morning, 3 days in a row.

This test is not as good at finding lung carcinoids as it is at finding other types of lung cancers.

Biopsy

In many cases, the only way to know for sure if a person has some type of lung cancer is to remove cells from the tumor and look at them under a microscope. This procedure is called a biopsy. There are several ways to take a sample from a lung tumor.

Bronchoscopy and biopsy

This approach is used to view and sample tumors in large airways. The doctor passes a long, thin, flexible, fiber-optic tube called a bronchoscope down the throat and through your windpipe and bronchi to look at the lining of the lung’s main airways. Your mouth and throat are sprayed first with a numbing medicine. You may also be given medicine through an intravenous (IV) line to make you feel relaxed.

If a tumor is found, the doctor can take biopsies (small samples of the tumor) through the tube. The doctor can also sample cells from the lining of the airways by wiping a tiny brush over the surface of the tumor (bronchial brushing) or by rinsing the airways with sterile saltwater and then collecting it (bronchial washing). Brushing and washing samples are sometimes helpful additions to the bronchial biopsy, but they are not as helpful in diagnosing carcinoids as they are with other lung cancers.

An advantage of this type of biopsy is that no surgery or hospital stay is needed, and you are ready to return home within hours. A disadvantage is that this type of biopsy may not always be able to remove enough to be certain that a tumor is a carcinoid. But with recent advances in the lab testing of lung tumors, doctors can usually make an accurate diagnosis even with very small samples.

Bleeding from a carcinoid tumor after a biopsy is rare but it can be serious. If bleeding becomes a problem, doctors can inject drugs through the bronchoscope into the tumor to narrow its blood vessels, or they can seal off the bleeding vessels with a laser aimed through the bronchoscope.

Endobronchial ultrasonography (EBUS) and biopsy

If a CT scan shows lymph nodes are enlarged on either side of the trachea or in the area just below where the trachea divides, this test can be used to biopsy these nodes to see if they contain cancer.

Ultrasound is a type of imaging test that uses sound waves to create pictures of the inside of your body. For this test, a small, microphone-like instrument called a transducer gives off sound waves and picks up the echoes as they bounce off body tissues. The echoes are converted by a computer into a black and white image on a computer screen.

For endobronchial ultrasound, a bronchoscope is fitted with an ultrasound transducer at its tip and is passed down into the windpipe. This is done with numbing medicine (local anesthesia) and light sedation.

The transducer can be pointed in different directions to look at lymph nodes and other structures in the mediastinum (the area between the lungs). A hollow needle can be passed through the bronchoscope to get biopsy samples of enlarged lymph nodes or other abnormal areas. The samples are then sent to a lab to be looked at under a microscope.

Needle biopsies

Doctors can often use a hollow needle to get a small sample from a suspicious area (mass). An advantage of needle biopsies is that they don’t require a surgical incision, but in some cases they might not get enough of a sample to make a diagnosis. There are two types of needle biopsies, based on the type of needle used:

• In a fine needle aspiration (FNA) biopsy, the doctor uses a syringe with a very thin, hollow needle (thinner than the ones used for blood tests) to withdraw (aspirate) cells and small fragments of tissue.
• In a core biopsy, a larger needle is used to remove one or more small cylinders (cores) of tissue. Core biopsies provide a larger sample than FNA biopsies.

If the suspected tumor is in the outer part of the lungs, either kind of biopsy needle can be inserted through the skin on the chest wall. This is called a transthoracic needle biopsy. The area where the needle is to be inserted may be numbed with local anesthesia first. The doctor then guides the needle into the area while looking at the lungs with either fluoroscopy (which is like an x-ray, but the image is shown on a screen rather than on film) or CT scans. Unlike fluoroscopy, CT doesn’t give a constant picture, so the needle is inserted toward the mass, a CT image is taken, and the direction of the needle is guided based on the image. This is repeated a few times until the needle is in the mass.

A possible complication of this procedure is that air may leak out of the lung at the biopsy site and into the space between the lung and the chest wall. This can cause part of the lung to collapse and could cause trouble breathing. This complication is called a pneumothorax. If the air leak is minimal, it often gets better without any treatment. A large pneumothorax is treated by putting a small tube into the chest space and sucking out the air over a day or two, after which it usually heals on its own.

An FNA biopsy may also be done to check for cancer in the lymph nodes between the lungs. This can be done in two ways:

• Transtracheal FNA or transbronchial FNA is done by passing the needle through the wall of the windpipe (trachea) or bronchi (the large airways leading into the lungs) during bronchoscopy or EBUS (already described above).
• In some cases an FNA biopsy is done during endoscopic esophageal ultrasound (which is similar to EBUS, except that the scope is passed down the esophagus instead of the windpipe) by passing the needle through the wall of the esophagus.

Surgical biopsies

In some cases, the types of biopsies above can’t remove enough tissue to identify the type of tumor, and your doctor may need to do surgery to get a biopsy sample. Different types of operations may be used. They are most often done in the operating room while you are under general anesthesia (in a deep sleep).

Thoracotomy: For a thoracotomy, the surgeon makes an incision (cut) in the chest wall between the ribs to get to the lungs and to the space between the lungs and the chest wall. In some cases if the doctor strongly suspects a carcinoid or some other type of lung cancer, they may do a thoracotomy and remove the entire tumor without first doing a biopsy.

Thoracoscopy: This procedure is also used to look at the space between the lungs and the chest wall, but it does not require a long incision like a thoracotomy. The doctor inserts a thin, lighted scope with a small video camera on the end through a small cut made in the chest wall to look at the outside of the lungs and the space between the lungs and the chest wall. (Sometimes more than one cut is made.) Using this scope, the doctor can see potential areas of cancer and remove small pieces of tissue to look at under the microscope. Thoracoscopy can also be used to sample lymph nodes and fluid and find out if a tumor is growing into nearby tissues or organs.

Mediastinoscopy: This procedure may be done if imaging tests such as a CT scan suggest that the cancer may have spread to the lymph nodes in the mediastinum (the space between the lungs). A small cut is made in the front of the neck and a thin, hollow, lighted tube is inserted behind the sternum (breast bone) and in front of the windpipe to look at the area. Instruments can be passed through this tube to take tissue samples from the lymph nodes along the windpipe and the bronchi.

Blood and urine tests

Because carcinoid tumors can secrete hormone-like chemicals into the blood, these tumors can sometimes be found with blood or urine tests. This is especially true if you have symptoms of the carcinoid syndrome, which is caused by excess levels of these chemicals in the blood.

Serotonin is made by some carcinoid tumors, and probably causes some of the symptoms. It is broken down by the body into 5-hydroxyindoleacetic acid (5-HIAA), which is released into the urine. A common test to look for carcinoid syndrome measures the levels of 5-HIAA in a urine sample collected over 24 hours. Measuring the serotonin levels in the blood or urine may also give useful information. These tests can help diagnose some carcinoid tumors, but they are not always accurate. Some other medical conditions, as well as foods and medicines, can affect the results, and some carcinoid tumors may not release enough of these substances to give a positive test result.

Other tests used to look for carcinoids include blood tests for chromogranin A (CgA), neuron-specific enolase (NSE), cortisol, and substance P. Depending on where the tumor might be located and on the patient’s symptoms, doctors may do other blood tests as well.

These tests are less likely to be helpful with lung carcinoid tumors than with carcinoid tumors that start elsewhere in the body.

Pulmonary function tests

If a lung carcinoid is found, pulmonary function tests (PFTs) are often done to see how well your lungs are working. This is especially important if surgery might be used to treat the cancer. Because surgery will remove part or all of the lung, it’s important to know how well your lungs are working. These tests can give the surgeon an idea of whether surgery is a good option, and if so, how much lung can be removed safely.

There are a few different types of PFTs, but they all basically have you breathe in and out through a tube that is connected to a machine that measures airflow.

After someone is diagnosed with a lung carcinoid tumor, doctors will try to figure out if it has spread, and if so, how far. This process is called staging. The stage of a cancer describes how much cancer is in the body. It helps determine how serious the cancer is and how best to treat it. Doctors also use a cancer's stage when talking about survival statistics.

The earliest stage is stage 0. The other main stages range from I (1) through IV (4). Some of these are divided further using letters or numbers. As a rule, the lower the stage, the less the cancer has spread. A higher number, such as stage IV, means cancer has spread more. And within a stage, an earlier letter (or number) means a lower stage. Although each person’s cancer experience is unique, cancers with similar stages tend to have a similar outlook and are often treated in much the same way.

How is the stage determined?

The staging system most often used for lung carcinoid tumors is the American Joint Committee on Cancer (AJCC) TNM system, which is based on 3 key pieces of information:

• The size and extent of the main tumor (T): How large is the tumor? Has it grown into nearby structures or organs?
• The spread to nearby lymph nodes (N): Has the cancer spread to nearby lymph nodes? (See image.)
• The spread (metastasis) to distant sites (M): Has the cancer spread to distant organs? (The most common site of spread is the liver.)

About 2 of 3 people with carcinoid tumors will have signs or symptoms that will lead to the diagnosis of the disease. But because carcinoids tend to grow slowly, they may not cause symptoms for several years in some people, or they may be found by medical tests done for other reasons.

Central carcinoids

Most carcinoid tumors start in the large bronchial tubes leading into the lung. Symptoms can include:

• Cough, which can sometimes be bloody
• Wheezing
• Shortness of breath
• Chest pain, especially when taking deep breaths

Large carcinoids can cause partial or complete blockage of an air passage, which can lead to pneumonia (an infection in the lung). Sometimes a doctor may suspect a tumor only after treatment with antibiotics doesn’t cure the pneumonia.

Peripheral carcinoids

Some tumors start in the smaller airways toward the outer edges of the lungs. They rarely cause any symptoms unless there are so many of them that they cause trouble breathing. Usually they are found as a spot on a chest x-ray or CT scan that is done for an unrelated problem.

Symptoms caused by hormones from the tumor

Some carcinoid tumors can make hormone-like substances that are released into the bloodstream. Lung carcinoids do this far less often than gastrointestinal carcinoid tumors.

Carcinoid syndrome: Rarely, lung carcinoid tumors release enough hormone-like substances into the bloodstream to cause symptoms. This results in the carcinoid syndrome. Symptoms can include

• Facial flushing (redness and warm feeling)
• Diarrhea
• Wheezing
• Fast heartbeat.

Many patients find that stress, heavy exercise, and drinking alcohol can bring on these symptoms or make them worse.

Over a long time, these hormone-like substances can damage heart valves, causing:

• Shortness of breath
• Weakness
• Heart murmur (an abnormal heart sound)

Cushing syndrome: In rare cases, lung carcinoid tumors may make a hormone called ACTH. This causes the adrenal glands to make too much cortisol (a steroid hormone) and other hormones. This can lead to:

• Weight gain
• Easy bruising
• Weakness
• Drowsiness
• High blood sugar (or even diabetes)
• High blood pressure
• Increased body and facial hair

The symptoms and signs above may be caused by lung carcinoid tumors, but they can also be caused by other conditions. Still, if you have any of these problems, it’s important to see your doctor so the cause can be found and treated, if needed.

About 1% to 2% of all lung cancers are carcinoids. There are about 4,000 newly diagnosed lung carcinoid tumors in the United States each year.

Carcinoid tumors actually develop more often in the digestive tract than in the lungs. Only about 3 out of 10 carcinoid tumors start in the lungs.

Lung carcinoids tend to be diagnosed in people who are slightly younger than the typical age of people with other types of lung cancer. The average age at diagnosis is around 60 years.

Information on survival rates for lung carcinoids can be found in Survival Rates for Lung Carcinoid Tumors.

Visit the American Cancer Society’s Cancer Statistics Center for more key statistics.         

A risk factor is anything that affects your chance of getting a disease such as cancer. Different cancers have different risk factors. Some risk factors, like smoking, can be changed. Others, like a person’s age or family history, can’t be changed.

But having a known risk factor, or even several risk factors, does not mean that you will get the disease. And some people who get the disease may have few or no known risk factors.

Not much is known about why lung carcinoid tumors develop in some people but not in others. Risk factors for lung carcinoid tumors include:

Gender

Lung carcinoids occur more often in women than in men. The reasons for this are not known.

Race/ethnicity

Lung carcinoids are more common in whites than in African Americans, Asian Americans, or Hispanics/Latinos.

Age

These tumors are usually found in people about 60 years old, which is slightly younger than the average age for other types of lung cancer. But carcinoids can occur in people of almost any age. Although it’s rare, lung carcinoid tumors are sometimes even found in children.

Multiple endocrine neoplasia type 1

People with multiple endocrine neoplasia type 1 (MEN1), an inherited syndrome, are at high risk for tumors in certain endocrine organs, such as the pancreas and the pituitary and parathyroid glands. These people also seem to be at increased risk for lung carcinoid tumors.

Family history

Most people with lung carcinoid tumors do not have a family history of this type of cancer, but having others in your family who had lung carcinoid tumors can increase your risk. In rare cases, several family members have been diagnosed with this cancer. The overall risk is still low because this cancer is so uncommon.

Tobacco smoke

Typical lung carcinoid tumors do not seem to be linked with smoking or with any known chemicals in the environment or workplace. But some studies have found that atypical lung carcinoids may be more common in people who smoke.

Not much is known about what causes lung carcinoid tumors. Researchers have learned a lot about how certain risk factors like cancer-causing chemicals or radiation can cause changes in lung cells that lead to carcinomas, the more common type of lung cancer. But these factors are not thought to play a large role in the development of lung carcinoid tumors.

Carcinoid tumors probably develop from tiny clusters of neuroendocrine cells called carcinoid tumorlets in the lung airways. Tumorlets are sometimes found unexpectedly in lung biopsies done to treat or diagnose other conditions. Under the microscope, tumorlets resemble carcinoid tumors, except that they are much smaller – less than 5 mm (about ¼ inch) across. Most tumorlets never grow any bigger, but some may eventually become carcinoid tumors.

Researchers have found some common changes in chromosomes and genes inside lung carcinoid tumor cells, which might affect how these cells function. But it is still not clear exactly how these changes cause carcinoid tumorlets to develop from lung neuroendocrine cells or how they might cause tumorlets to grow to become carcinoid tumors.

Because we do not yet know what causes most lung carcinoid tumors, it is not possible to know how to prevent them.

Smoking has been linked with an increased risk of atypical carcinoids in some studies, so quitting (or not starting) might reduce a person’s risk.

Lung carcinoid tumors are not common, and there are no widely recommended screening tests for these tumors in most people. (Screening is testing for cancer in people without any symptoms.)

People with multiple endocrine neoplasia type 1 (MEN1) are at increased risk for these tumors, and some doctors recommend they have computed tomography (CT) scans of the chest every 3 years starting when they are age 20.

Because carcinoid tumors usually grow and spread slowly, most are found at an early or localized stage, even if they have been causing symptoms for some time.

Many patients with peripheral carcinoid tumors or with small central carcinoid tumors have no symptoms. Carcinoids that are not causing symptoms often are found on a chest x-ray or CT scan done for other reasons.

If cancer keeps growing or comes back after one kind of treatment, it is possible that another treatment plan might still control the cancer, or at least keep it in check enough to help you live longer and feel better. Clinical trials also might offer chances to try newer treatments that could be helpful. But when a person has tried many different treatments and the cancer is still growing, even newer treatments might no longer be helpful. If this happens, it’s important to weigh the possible limited benefits of trying a new treatment against the possible downsides, including treatment side effects. Everyone has their own way of looking at this.

This is likely to be the hardest part of your battle with cancer – when you have been through many treatments and nothing’s working anymore. Your doctor might offer you new options, but at some point you may need to consider that treatment is not likely to improve your health or change your outcome or survival.

If you want to continue to get treatment for as long as you can, you need to think about the odds of treatment having any benefit and how this compares to the possible risks and side effects. Your doctor can estimate how likely it is the cancer will respond to treatment you are considering. For instance, the doctor might say that more treatment might have about a 1 in 100 chance of working. Some people are still tempted to try this. But it is important to have realistic expectations if you do choose this plan.

Palliative or supportive care

No matter what you decide to do, it’s important that you feel as good as you can. Make sure you are asking for and getting treatment for any symptoms you might have, such as nausea or pain. This type of treatment is called palliative or supportive care.

Palliative care helps relieve symptoms, but it’s not expected to cure the disease. It can be given along with cancer treatment, or can even be cancer treatment. The difference is its purpose – the main goal of palliative care is to improve the quality of your life, or help you feel as good as you can for as long as you can. Sometimes this means using drugs to help with symptoms like pain or nausea. Sometimes, though, the treatments used to control your symptoms are the same as those used to treat cancer. For instance, radiation or chemo might be used to help relieve pain caused by a large tumor. But this is not the same as treatment to try to cure the cancer.

Hospice care

At some point, you may benefit from hospice care. This is special care that treats the person rather than the disease; it focuses on quality rather than length of life. Most of the time, it is given at home. Your cancer may be causing problems that need to be managed, and hospice focuses on your comfort. You should know that while getting hospice care often means the end of treatments such as chemo and radiation, it doesn’t mean you can’t have treatment for the problems caused by your cancer or other health conditions. In hospice the focus of your care is on living life as fully as possible and feeling as well as you can at this difficult time. You can learn more in Hospice Care.

Staying hopeful is important, too. Your hope for a cure may not be as bright, but there is still hope for good times with family and friends – times that are filled with happiness and meaning. Pausing at this time in your cancer treatment gives you a chance to refocus on the most important things in your life. Now is the time to do some things you’ve always wanted to do and to stop doing things you no longer want to do. Though the cancer may be beyond your control, there are still choices you can make.

You can learn more about the changes that occur when curative treatment stops working, and about planning ahead for yourself and your family, in Advanced Directives and Nearing the End of Life.

For many people with carcinoid tumors, treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.

It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to accept this uncertainty and are living full lives. Understanding Recurrence gives more detailed information on this.

For other people, the cancer may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to try to help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful. It has its own type of uncertainty. Managing Cancer As A Chronic Illness has more information about this.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask about any problems you are having and may do exams, lab tests, or imaging tests (such as x-rays or CT scans) to look for signs of cancer or treatment side effects.

Your doctor will most likely want to see you fairly often (every couple of months or so) at first. The time between visits may be extended if there are no problems. Lung carcinoid tumors are often cured by the initial treatment, but sometimes they can come back (recur) many years later, which is why doctors often advise close follow-up for at least 10 years.

Almost any cancer treatment can have side effects. Some may last for a few weeks or months, but others can last the rest of your life. During your doctor visits, talk to your cancer care team about any changes or problems you notice and let them know about any questions or concerns you have.

It’s important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

If the cancer does recur at some point, further treatment will depend on the type and location of the cancer, what treatments you’ve had before, and your health. For more information on how recurrent cancer is treated, see Treatment of Lung Carcinoid, By Type and Extent of Disease. For more general information on dealing with a recurrence, you may also want to see Coping With Cancer.

Seeing a new doctor

At some point after your treatment, you may be seeing a new doctor who doesn’t know about your medical history. It’s important to be able to give your new doctor the details of your diagnosis and treatment. Gathering these details during and soon after treatment may be easier than trying to get them at some point in the future. Make sure you have the following information handy (and always keep copies for yourself):

• A copy of your pathology report(s) from any biopsies or surgeries
• If you had surgery, a copy of your operative report(s)
• If you stayed in the hospital, a copy of the discharge summary the doctor wrote when you were sent home
• If you had radiation therapy, a copy of your treatment summary
• If you had chemotherapy or other medicines, a list of your drugs, drug doses, and when you took them
• A copy of your x-rays or other imaging tests (which can often be stored digitally on a DVD, etc.)
• Contact information of the doctors who have treated your cancer