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Neuroendocrine Tumor of the Lung - Introduction

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Neuroendocrine Tumor of the Lung. Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

About neuroendocrine tumors

A tumor begins when the DNA of healthy cells is damaged, causing the cells to grow out of control, forming a mass. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body if it is not found early and treated.

A neuroendocrine tumor (NET) begins in the specialized cells of the body’s neuroendocrine system. These cells have traits of both hormone-producing endocrine cells and nerve cells. They are found throughout the body’s organs and help control many of the body’s functions. Hormones are chemical substances that are carried through the bloodstream to have a specific effect on the activity of other organs or cells in the body. All NETs are considered malignant tumors. Most NETs take years to develop and grow slowly. However, some NETs can be fast-growing. See the Stages and Grades section to learn more.

NETs develop most commonly in the lung or the gastrointestinal (GI) tract (learn more about GI tract NETs). Lung NETs are also called carcinoid tumors or carcinoids. NETs can also develop in the pancreas (learn more about NETs of the pancreas) and other locations throughout the body. Rare types of NET that develop in or on the adrenal glands are called pheochromocytoma or paraganglioma. Learn more about NETs that develop in other parts of the body.

The rest of this guide is about lung NETs.

About lung NETs

While most NETs begin in the GI tract, about 30% occur in the bronchial system, or airways, of the lungs. When a person inhales, the bronchial system carries air to the lungs. The lungs absorb oxygen from the air and bring the oxygen into the bloodstream so it can be delivered to the rest of the body. As the body’s cells use oxygen, they release carbon dioxide. The bloodstream carries carbon dioxide back to the lungs, and the carbon dioxide leaves the body when a person exhales.

A small number of lung NETs can make high levels of hormone-like substances called neuropeptides and amines. If these substances are released in high amounts, they may lead to a group of symptoms called carcinoid syndrome (see Symptoms and Signs). However, if these substances are released in smaller amounts, then there may be no symptoms of the developing NET.

Types of lung NETs

There are 2 types of lung NETs: typical carcinoids and atypical carcinoids. There are other types of NETs that develop in the lung, called small cell neuroendocrine carcinoma (or small cell lung cancer) and large cell neuroendocrine carcinoma (a type of non-small cell lung cancer). The type of lung NET is defined by the pathologist and based on how much cancer cells look like healthy cells when viewed under a microscope. In addition, the categories are based on the number of dividing cells, called the mitotic index, and whether there are dead cells in the tumor, which is called necrosis. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

Typical and atypical carcinoids can grow slowly for years without being found. Although these types of lung NETs are cancerous, they are often described as "cancer in slow motion."

NETs are also described as “functional” or “non-functional.” Functional NETs release enough neuropeptides and amines to cause symptoms. Non-functional NETs do not release enough substances to cause symptoms.

The next section in this guide is Statistics. It helps explain the number of people who are diagnosed with a lung NET and general survival rates. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Statistics

Approved by the Cancer.Net Editorial Board, 01/2020

ON THIS PAGE: You will find information about the number of people who are diagnosed with a lung neuroendocrine tumor (NET) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Each year, an estimated 2,000 to 4,500 adults in the United States are diagnosed with a lung NET. These tumors make up 1% to 2% of all lung cancers.

As explained in the Introduction, NETs more commonly develop in the GI tract than in the lungs. About 20% of all NETs develop in the lungs. Overall, the number of people diagnosed with a NET has been increasing for years. This increase is thought to be mostly related to improvements in the way NETs are diagnosed, including better imaging tests and endoscopy, and increased awareness of these tumors.

The 5-year survival rate tells you what percent of people live at least 5 years after the tumor is found. Percent means how many out of 100. The 5-year survival rate for a lung NET is 89%. However, the survival rate depends on many factors, including the type of tumor.

When a lung NET is only in the area where it began, called localized or early stage, the 5-year survival rate is 97%. The 5-year survival rate if the tumor has spread to nearby areas, called regional, is 86%. When the disease has spread to other parts of the body, called distant or stage IV, the 5-year survival rate is 58%.

It is important to remember that statistics on the survival rates for people with a lung NET are an estimate. The estimates come from annual data based on the number of people with this type of tumor in the United States. These numbers include both typical and atypical lung NETs, and survival rates would be expected to be somewhat higher for typical NETs and somewhat lower for atypical NETs.

Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society website (January 2020) and Dasari A, et al.: Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol. 2017;3(10):1335–1342. doi:10.1001/jamaoncol.2017.0589.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by a lung NET. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find a basic drawing of the main body parts affected by a lung NET. Use the menu to see other pages.

A lung NET may affect the brain, bone, and/or the liver.

The lungs are located under the ribs, and above the liver, the adrenal gland, and the kidneys. The lungs are made up of 2 lobes, a right lobe and left lobe. A hollow tube, the trachea, carries air to the lungs, branching throughout both lobes. Lymph nodes, tiny, bean-shaped organs, are located in the lungs, the center of the chest, and elsewhere in the body. Copyright 2004 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

The next section in this guide is Risk Factors. It explains the factors that may increase the chance of developing a lung NET. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Risk Factors

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find out more about the factors that increase the chance of developing a lung NET. Use the menu to see other pages.

A risk factor is anything that increases a person’s chance of developing a tumor. Although risk factors often influence the development of a tumor, most do not directly cause cancer. Some people with several risk factors never develop a tumor, while others with no known risk factors do. Knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

What causes lung NETs is unknown, and no avoidable risk factors have been found. These tumors do not appear to be caused by or related to smoking. However, the following factors may raise a person’s risk of developing this type of 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 a lung NET.

  • Race and gender. Lung NETs are more common in white people than in other racial and ethnic groups. More women than men develop lung NETs, but the reason why is not known.

  • Age. The average age at diagnosis for a typical carcinoid tumor is 45 years. The average age at diagnosis for an atypical carcinoid tumor is 55 years. Children rarely develop NETs.

  • Environment and diet. There are no known connections between the environment and what a person eats and the risk of developing a lung NET.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems a lung NET can cause. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

A lung NET often causes no symptoms in its early stages. This type of tumor is usually found by a surgeon during an unrelated surgery or on imaging tests for another condition. People with a lung NET may experience the following symptoms or signs. The signs and symptoms of carcinoid syndrome and carcinoid crisis, which are conditions that a lung NET can cause, are also described. However, the cause of a symptom may be a different medical condition that is not a lung NET.

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.

Symptoms of a lung NET

There are 2 ways in which a lung NET can cause symptoms. A tumor can block the airway, causing a cough or shortness of breath. Or, hormones released by the tumor can cause carcinoid syndrome (see below). A lung NET is much less likely to cause carcinoid syndrome than a GI tract NET.

People with a lung NET may experience the following symptoms or signs:

  • Cough, with or without bloody sputum or phlegm

  • Wheezing

  • Post-obstructive pneumonia, which is when a tumor blocking a large air passage causes an infection

  • Chest pain

  • Carcinoid syndrome

Carcinoid syndrome

Carcinoid syndrome is the classic example of a functional NET and occurs most commonly in people with small intestine NETs. In carcinoid syndrome, serotonin is produced by the tumor and can cause symptoms. Serotonin is most easily and reliably measured in the urine, when it gets converted into 5-hydroxyindoleacetic acid (5-HIAA), and it is measured with a 24-hour urine collection. Not all people with a NET develop carcinoid syndrome.

People with carcinoid syndrome may experience 1 or more of the following symptoms or signs. It is important to note that these symptoms alone are not enough to diagnose carcinoid syndrome. Blood or urine tests to measure for suspected hormones are also needed to make a diagnosis.

  • Facial flushing, which is redness and a warm feeling over the face

  • Sweating

  • Diarrhea

  • Shortness of breath

  • Wheezing or asthma-like symptoms

  • Weakness

  • Fast heartbeat

  • Heart murmur

  • High blood pressure and significant fluctuations in blood pressure

  • Carcinoid heart disease, which is a scarring of the heart valves

Carcinoid syndrome may damage the heart, so reducing its symptoms is important. Stress, strenuous exercise, and drinking alcohol may make these symptoms worse. Some foods may also trigger the symptoms of carcinoid syndrome, including foods high in:

  • Amines, such as aged cheeses, yeast extracts, tofu, sauerkraut, and smoked fish and meats

  • Serotonin, such as walnuts, pecans, plantains, bananas, and tomatoes

Carcinoid crisis

Carcinoid crisis is a term used when patients experience severe, sudden symptoms of carcinoid syndrome, usually in times of extreme stress, such as surgery. Carcinoid crisis primarily includes serious fluctuations in blood pressure and heart rate. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome. A carcinoid crisis may be prevented and successfully treated with octreotide (Sandostatin), a medication that helps control the production of hormones, or lanreotide (Somatuline Depot).

Managing symptoms of carcinoid syndrome

If a lung NET is diagnosed, relieving symptoms remains an important part of medical care and treatment. This may be called palliative care or supportive care. It is often started soon after diagnosis and continued throughout treatment.

Below is information on how some of the symptoms of a lung NET can be managed. Be sure to talk with your health care team regularly about the symptoms you experience, including any new symptoms or a change in symptoms.

  • Facial flushing. Avoid stress. Ask your doctor about specific substances and foods, including alcohol, that can cause facial flushing related to carcinoid syndrome, so you can avoid them.

  • Wheezing. Depending on what causes the wheezing, a bronchodilator may be helpful. A bronchodilator is a medication that relaxes the muscles in the lungs to make breathing easier.

  • Diarrhea. There can be many causes of diarrhea in people with a NET. If your diarrhea is caused by carcinoid syndrome, somatostatin analogs and telotristat ethyl (Xermelo) can help. Ask your doctor for specific recommendations.

  • Heart problems. Tell your doctor immediately if you think you may have a problem with your heart because carcinoid syndrome can damage heart valves.

Learn more about managing common cancer symptoms and treatment side effects.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Diagnosis

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, a lung NET. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has a tumor. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This section describes options for diagnosing a lung NET. Not all tests listed below will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and general health

  • The results of earlier medical tests

Most lung NETs are found unexpectedly when people have imaging tests or a medical procedure done for reasons unrelated to the tumor. If a doctor suspects this type of tumor, they will ask you for a complete medical and family history and perform a thorough physical examination. In addition, the following tests may be used to diagnose a lung NET:

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope to make a diagnosis of NET. A pathologist then analyzes the sample(s) removed during the biopsy. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. Your doctor may recommend running laboratory tests on a tumor sample to identify specific genes unique to the tumor. This testing is less helpful in NETs than in other cancers.

  • Bronchoscopy. This is a type of endoscopy that allows the doctor to see inside the airway and lungs with a thin, lighted, flexible tube called a bronchoscope. The person may be sedated as the tube is inserted through the nose or mouth and into the lungs. Sedation is giving medication to become more relaxed, calm, or sleepy. If an abnormality is found, a biopsy will be performed.

  • Endobronchial ultrasound. An endobronchial ultrasound (EBUS) uses sound waves to create a picture of internal organs. During an EBUS, a machine that produces the sound waves, called a transducer, is inserted through the mouth and windpipe, or trachea, to look at the lungs and lymph nodes. The device is also able to take tissue samples for analysis. EBUS can show enlarged lymph nodes, which may help the doctor find a tumor or figure out the stage of the disease. The person will be sedated during this procedure.

  • X-ray. An x-ray is a way to create a picture of the structures inside the body. A chest x-ray may be taken to look for a lung NET. Sometimes, the tumor may not show up on a chest x-ray because of its size or location, so the doctor may also recommend other types of scans.

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Additionally, a CT scan is used to see if the tumor has spread to the lymph nodes or to distant sites like the liver. A special dye called a contrast medium is usually given before the scan to provide better detail on the image. This dye is injected into a patient’s vein.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. For lung NETs, an MRI of the abdomen can be used to look for cancer that has spread to other places in the body. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye is injected into a patient’s vein.

  • Nuclear medicine imaging. During this test, a small amount of a radioactive drug, called a tracer, is injected into a patient’s vein. The body is then scanned to show where the radioactivity has built up in the body. There are a few available methods of nuclear medicine imaging in NETs, including OctreoScan and 2 types of PET-CT scans.

    • OctreoScan. This imaging test uses octreotide linked with indium-111 as the tracer. This procedure is useful for identifying where a NET has spread, especially if it has spread to the liver.

    • Positron emission tomography (PET) or PET-CT scan. A PET scan is usually combined with a CT scan (see above), called a PET or PET-CT scan. The 2 types of tracers used in a PET scan include gallium-68 (68Ga) DOTATATE and (18F) fluorodeoxyglucose (FDG). The 68Ga DOTATATE PET is the main scan used to look at slow-growing NETs (grades 1 and 2, see Stages and Grades). An FDG PET scan is used for faster-growing NETs (grade 3) and also sometimes for grade 2 NETs (atypical carcinoids).

  • Blood/urine tests. The doctor may need samples of your blood and urine to check for abnormal levels of hormones and other substances. Urine tests check the amount of 5-HIAA, a product of serotonin breakdown. Serotonin, a neurotransmitter involved in behavior and depression, is made by some NETs. So if a test finds 5-HIAA, the results may suggest that a NET is present. Measurements of serotonin levels may also be taken. In rare cases, a doctor may be able to diagnose a NET from a urine test alone. A blood test to measure chromogranin-A, a protein produced by tumor cells, may be needed since the serum serotonin level often changes and may not be as useful as a chromogranin-A test.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the tumor. This is called staging.

The next section in this guide is Stages and Grades. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Stages and Grades

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage. In addition, you can read about how doctors compare cancer cells to healthy cells, called grading. Use the menu to see other pages.

Staging is a way of describing where the tumor is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out 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 inform a patient’s prognosis, which is the chance of recurrence or survival. There are different stage descriptions for different types of NETs.

The staging of a lung NET is the same as the staging of non-small cell lung cancer (NSCLC).

In general, a lower number stage is linked with a better outcome. However, no doctor can predict how long a patient will live with a lung NET based only on the stage of disease.

Cancer stage grouping

The stage of lung NET is based on a combination of several factors, including:

  • The size and location of the tumor

  • Whether it has spread to the lymph nodes and/or other parts of the body.

There are 5 stages for lung NETs: stage 0 (zero) and stages I through IV (1 through 4). One important treatment assessment is to find out whether the tumor can be completely removed by a surgeon. If it is possible, the surgeon must remove the tumor, along with the surrounding, healthy lung tissue. In general, the lymph nodes are also removed in a systematic fashion.

Stage 0

This is called in situ disease, meaning the tumor is “in place” and has not grown into nearby tissues and spread outside the lung. This tumor is not invasive.

Stage I

A stage I lung NET is a small tumor that has not spread to any lymph nodes. Stage I is divided into 2 substages based on the size of the tumor:

  • Stage IA tumors are 3 centimeters (cm) or less in size. Stage IA tumors may be further divided into IA1, IA2, or IA3, based on the size of the tumor.

  • Stage IB tumors are more than 3 cm but 4 cm or less in size.

Stage II

A stage II lung NET is divided into 2 substages:

  • Stage IIA describes a tumor larger than 4 cm but 5 cm or less in size that has not spread to the nearby lymph nodes.

  • Stage IIB describes a tumor that is 5 cm or less in size that has spread to the lymph nodes. Or, stage IIB can describe be a tumor more than 5 cm wide that has not spread to the lymph nodes.

Stage III

Stage III lung NETs are classified as either stage IIIA, IIIB, or IIIC. The stage is based on the size of the tumor and which lymph nodes the cancer has spread to. Stage III cancers have not spread to other distant parts of the body.

For many stage III cancers, the tumor is difficult, and sometimes impossible, to remove with surgery. For example, the lung NET may have spread to the lymph nodes located in the center of the chest, which is outside the lung. Or, the tumor may have grown into nearby structures in the lung. In either situation, it is less likely that the surgeon can completely remove the cancer. Sometimes it is not possible to remove lung NETs if they have spread to the lymph nodes above the collarbone or if they have grown into vital structures within the chest. These vital structures include the heart, large blood vessels, or the main breathing tubes leading to the lungs.

Stage IV

Stage IV means the lung NET has spread to more than 1 area in the opposite lung, the fluid surrounding the lung or the heart, or distant parts of the body through the bloodstream. Once cancer cells get into the blood, the cancer can spread anywhere in the body. A lung NET is more likely to spread to the brain, bones, liver, and adrenal glands. Stage IV is divided into 2 substages:

  • Stage IVA cancer has spread within the chest, such as the opposite lung or the lining of the heart or lung, and/or has spread to only 1 area outside of the chest.

  • Stage IVB has spread outside of the chest, with more than 1 metastases outside the lung, in 1 or more organs.

In general, surgery is not successful for most stage IV lung NETs. In these situations, the doctor will recommend other treatment options.

Grade (G)

Doctors also describe a lung NET by its grade (G). The grade describes how much tumor cells look like healthy cells when viewed under a microscope. The doctor compares the cancerous tissue with healthy tissue. Healthy tissue usually contains many different types of cells grouped together. If the cancer looks similar to healthy tissue, it is called “differentiated” or a “low-grade tumor.” If the cancerous tissue looks very different from healthy tissue, it is called “poorly differentiated” or a “high-grade tumor.”

For NETs, the grade describes how fast the tumor cells are growing and dividing, a process called mitosis, as well as whether there are dead cells in the tumor, which is called necrosis.

The tumor’s grade may help the doctor predict how quickly the cancer will spread. In general, the lower the tumor’s grade, the better the prognosis.

GX: The tumor grade cannot be identified.

G1: The cells are more like healthy cells (called well differentiated), also called “typical carcinoid.” A limited number of cells are dividing, when measured by a tool called the mitotic index. The mitotic index is less than 2, and there is no necrosis.

G2: The cells are somewhat like healthy cells (called moderately differentiated), also called “atypical carcinoid.” The mitotic index is 2 to 10, meaning an intermediate number of cells is dividing. The tumor may outgrow its blood supply in the area, which will lead to necrosis.

G3: The cells look less like healthy cells (called poorly differentiated). The mitotic index is more than 10, meaning that a large number of cells are dividing, or the tumor has outgrown its blood supply in many areas, which will lead to cell death (necrosis).

Recurrent NETs

Recurrent cancer is cancer that has come back after treatment. If the NET does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Used with permission of the American College of Surgeons, Chicago, Illinois. The original and primary source for this information is the AJCC Cancer Staging Manual, Eighth Edition (2017), published by Springer International Publishing.

Information about the tumor’s stage and grade will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Types of Treatment

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will learn about the different types of treatments doctors use for people with a lung NET. Use the menu to see other pages.

This section explains the types of treatments that are the standard of care for a lung NET. “Standard of care” means the best treatments known. When making treatment plan decisions, you are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn whether the new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option to consider for treatment and care for all stages of cancer. Your doctor can help you consider all your treatment options. Learn more about clinical trials in the About Clinical Trials and Latest Research sections of this guide.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team and is especially important for people with a NET. Cancer care teams include a variety of other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

Descriptions of the common types of treatments used for a lung NET are listed below. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care.

Treatment options and recommendations depend on several factors, including the stage and grade of cancer, possible side effects, and the patient’s preferences and overall health. Learn about all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of talks are called “shared decision making.” Shared decision making is when you and your doctors work together to choose treatments that fit the goals of your care. Shared decision making is particularly important for lung NETs because there are different treatment options. Learn more about making treatment decisions.

Surgery

Surgery, also called resection, is the removal of the tumor and some surrounding healthy tissue during an operation. A surgical oncologist is a doctor who specializes in cancer surgery. Completely removing the entire tumor is the standard treatment, when possible. Most localized (early stage I to II and some stage III) lung NETs are successfully treated with surgery alone. The surgeon will usually remove some tissue surrounding the tumor, called a margin, in an effort to leave no traces of cancer in the body. Often, lymph nodes will be tested for cancer and/or removed during surgery. If no surgery is possible, it is called an “inoperable” tumor. In these situations, the doctor will recommend another type of treatment.

It's important to tell your surgical team if you have experienced carcinoid syndrome before your operation. This is because people who have developed carcinoid syndrome are at risk of experiencing a carcinoid crisis during surgery (see Symptoms and Signs). To avoid major complications from a carcinoid crisis, the anesthesiology team must be fully aware of this risk before surgery, so they can have treatment on hand to prevent or control the symptoms.

Surgical options for a lung NET include:

  • Sleeve resection. The tumor is surgically removed, along with parts of the airway above and below the tumor. The airway is then reconnected. This procedure may be recommended for centrally located tumors.

  • 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 or located on the edge of a lung, away from the large airways.

  • Lobectomy. During this surgery, an entire lobe of a lung is removed. This surgery is the most common procedure for lung NETs.

  • Pneumonectomy. During this operation, an entire lung is removed. This surgery is often done if sleeve resection is not possible for a centrally located tumor.

  • Lymph node dissection. Removal of the lymph nodes near the lungs is also common during surgery for a lung NET. Removing the lymph nodes is often part of a complete surgical resection.

  • Liver resection. This operation removes cancer that has spread to the liver. It may not be recommended for all people with cancer that has spread to the liver. The goal of this surgery is not to eliminate the cancer, but it often helps relieve or reduce the symptoms of carcinoid syndrome.

Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have. Learn more about the basics of cancer surgery.

Therapies using medication

Systemic therapy is the use of medication to destroy cancer cells. Common ways to give systemic therapies include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). This type of medication can reach cancer cells throughout the body. Systemic therapies are generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.

The types of systemic therapies used for a lung NET include:

  • Somatostatin analogs

  • Chemotherapy

  • Targeted therapy

  • Peptide receptor radionuclide therapy (PRRT)

Each of these types of therapies are discussed below in more detail. A person may receive 1 type of systemic therapy at a time or a combination of systemic therapies given at the same time. Sometimes, they can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications. Learn more about your prescriptions by using searchable drug databases.

Somatostatin analogs

Somatostatin is a hormone in the body that controls the release of several other hormones, such as insulin and glucagon. Somatostatin analogs are drugs that are similar to somatostatin and are used to control the symptoms created by the hormones released by a NET, also called carcinoid syndrome. They may also slow the growth of a NET, although they do not generally shrink tumors.

There are 2 somatostatin analogs used to treat NETs: octreotide and lanreotide. Neither of these medications has been approved by the U.S. Food and Drug Administration (FDA). Octreotide is available in 2 forms: short-acting is given under the skin (subcutaneously) and long-acting is given as an intramuscular (IM) injection. Short-acting is generally prescribed for people with the breathing-related symptoms of carcinoid syndrome. Lanreotide is given as a long-acting subcutaneous injection. The most common side effects are high blood sugar levels, the development of gallstones, and mild digestive system upset, such as bloating and nausea. Ask your health care team about how side effects can be managed.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. Chemotherapy for a lung NET is most often used when the tumor has spread to other organs, is growing quickly, or is causing severe symptoms. These tumors usually do not respond to chemotherapy alone, but some tumors do shrink in some patients.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time. The most common chemotherapy regimens for a lung NET include:

  • Carboplatin (available as a generic drug) or cisplatin (available as a generic drug), plus etoposide (available as a generic drug)

  • Temozolomide (Temodar), with or without capecitabine (Xeloda)

  • FOLFOX, a combination of fluorouracil (5-FU) with leucovorin (folinic acid) and oxaliplatin (Eloxatin), is sometimes used

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished. In rare cases, some chemotherapy drugs increase a person’s risk of developing secondary cancers. Talk with the doctor about possible side effects of chemotherapy in your treatment plan.

Learn more about the basics of chemotherapy.

Targeted therapy

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells while limiting damage to healthy cells.

Not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. Although this testing may find specific abnormalities in a lung NET, at this time this information does not generally help with making treatment decisions for lung NETs. However, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

Everolimus (Afinitor) is a targeted therapy and is currently the only 1 approved by the FDA for the treatment of advanced lung NETs. This drug can help slow down the growth of these tumors in some people, but it does not usually shrink tumors. Side effects include mouth sores, fluid retention or edema, lowering of blood counts, and fatigue.

Larotrectinib (Vitrakvi) is a type of targeted therapy that is not specific to a certain type of cancer but focuses on a specific genetic change called an NTRK fusion. This type of genetic change is found in a range of cancers, including NETs, although this is extremely rare. It is approved as a treatment for a lung NET that is metastatic or cannot be removed with surgery and has worsened with other treatments.

Other targeted therapies for lung NETs are being researched in clinical trials. They include drugs that interfere with new blood vessel formation or with specific survival pathways of cancer cells. Talk with your doctor about possible side effects for a specific medication and how they can be managed.

Peptide receptor radionuclide therapy (PRRT)

In January 2018, the FDA approved a treatment called 177Lu-dotatate (Lutathera) for the treatment of advanced GI tract NETs. It is being studied for the treatment of some lung NETs but is not approved by the FDA. This is a radioactive drug that works by binding to a cell’s somatostatin receptor, which may be present on certain tumors. After binding to the receptor, the drug enters the cell, allowing radiation to damage the tumor cells. Common side effects include nausea and vomiting, abdominal pain, and lowered levels of blood cells. Talk with your doctor about ways these can be avoided or managed. The broader term to describe this treatment is peptide receptor radionuclide therapy (PRRT).

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist.

The most common type of radiation treatment for a lung NET is called external-beam radiation therapy, which is radiation given from a machine outside the body. It is most often used as part of palliative, or supportive, care to relieve symptoms, such as pain, caused by cancer that has spread to the bone or other areas of the body (see “Physical, emotional, and social effects of cancer” below). In uncommon situations, radiation therapy is used to treat a tumor that cannot be removed with surgery but otherwise has not spread.

Patients receiving radiation therapy may experience fatigue during treatment, and the skin in the treated area may become red and dry. Radiation therapy to the chest or neck may cause a dry, sore throat, difficult or painful swallowing, or a dry cough. Some patients have shortness of breath during or after radiation therapy. Most side effects go away after the treatment is finished. Learn more about the basics of radiation therapy.

Liver-directed treatment

If cancer has spread to the liver, the treatments below may be used. These procedures are usually performed by an experienced interventional radiologist and may require an overnight hospital stay. Side effects may include pain around the liver, fever, and higher levels of liver enzymes as measured by blood tests for a few days or weeks after treatment.

  • Radiofrequency ablation (RFA). RFA destroys a tumor by heating it with an electric current. It is usually used for small liver metastases and does not work well on larger tumors.

  • Hepatic artery embolization. This procedure blocks the tumor’s blood supply by sealing off the blood vessels leading to the tumor. If embolization is done by itself, it is called bland embolization. When combined with chemotherapy, it is called chemoembolization. It is not yet clear if 1 treatment is more effective than the other. These treatments are usually used for people with metastatic disease that mostly affects the liver, in particular those who have symptoms caused by the size of the tumor or hormones produced by the tumor.

  • Radioembolization. This form of radiation therapy involves the use of tiny beads made of glass or resin that contain low levels of a radioactive material called yttrium-90. The beads are put into the blood vessel that sends blood to the tumor in the liver. The beads then become stuck in the liver and deliver the radiation directly to the tumor. This treatment avoids exposing other areas of the body to radiation. There are 2 FDA-approved methods of radioembolization: SIR-Spheres and TheraSphere.

Physical, emotional, and social effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. This often requires a team approach. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. You may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy.

For some people, such as those with high-risk heart disease or other specific medical conditions that increase the risk of problems from surgery, surgery cannot be used to successfully treat the cancer. In these cases, less-risky procedures to relieve symptoms may be helpful. This may include treating symptoms of blocked airways by removing most of the tumor through a bronchoscope or vaporizing large portions of the tumor with a laser. Bronchoscopic approaches may be used together with radiation therapy.

Before treatment begins, talk with your doctor about the goals of each treatment in the treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options.

During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website.

Metastatic lung NET

If cancer spreads to another distant part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

Your treatment plan may include a combination of the types of treatment described above. It is very uncommon to use surgery to treat metastatic disease. If it is used, surgery is used to relieve symptoms rather than eliminate the cancer at this stage (see above). Surgery to remove liver metastases may be performed, sometimes in people with carcinoid syndrome in an effort to reduce hormone levels. However, local bronchoscopic procedures may be used to relieve symptoms if a tumor blocks an airway. Radiation therapy with or without chemotherapy may also be offered to help relieve symptoms. Participation in clinical trials is encouraged. Palliative care will also be important to help relieve symptoms and side effects. Systemic therapy using medication is an important part of the treatment for metastatic disease. However, observation may be an option for those with a very-slow-growing tumor. Observation means that doctors closely monitor patients using physical examinations, imaging tests, and laboratory tests on a regular basis. Active treatment only begins if the person develops symptoms or tests indicate that the cancer is getting worse.

For most people, a diagnosis of metastatic cancer is very stressful and difficult. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it is important to talk with your doctor about the possibility of the cancer returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a new cycle of testing will begin again to learn as much as possible about the recurrence. After this testing is done, you and your doctor will talk about the treatment options. Depending on the specific features of the recurrence, the treatment plan may include the treatments described above, such as surgery, chemotherapy, and radiation therapy, but they may be used in a different combination or given as separate lines of treatment. Your doctor may suggest clinical trials that are studying new ways to treat this type of recurrent tumor. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with recurrent cancer often experience emotions such as disbelief or fear. You are encouraged to talk with the health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence.

If treatment does not work

If the cancer cannot be cured or controlled and there are no further treatment options, the lung NET may be called terminal.

This diagnosis is stressful, and for many people, this situation is difficult to discuss for many people. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help. Making sure a person is physically comfortable, free from pain, and emotionally supported is extremely important.

People who have advanced, incurable cancer and who are expected to live less than 6 months may want to consider hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to talk with the health care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with a lung NET. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - About Clinical Trials

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ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for people with a lung NET. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the FDA was tested in clinical trials.

Clinical trials may be developed and used for all types and stages of lung NETs. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate diagnostic tests, new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some people, a clinical trial is the best treatment option available. Because standard treatments are not perfect, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other people volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating a lung NET. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with a lung NET.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” When used, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, people must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that people participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for lung NETs, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for lung NETs. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Latest Research

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will read about the scientific research being done to learn more about lung NETs and how to treat them. Use the menu to see other pages.

Doctors are working to learn more about lung NETs, ways to prevent them, how to best treat them, and how to provide the best care to people diagnosed with this type of tumor. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options that are best for you.

  • New treatment approaches. Currently, many clinical trials for lung NETs are studying new drugs and different drug combinations. New approaches to drug treatment include targeted therapy and immunotherapy, as described in Types of Treatment.

  • Genetics. As outlined in Risk Factors, family history of MEN1 may play a role in an individual’s risk for developing a lung NET. Researchers are investigating MEN1 to learn more about this hereditary risk factor.

  • Palliative care/supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current treatments for a lung NET to improve comfort and quality of life for patients.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding lung NETs, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, social, and financial changes that a lung NET and its treatment can bring. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Coping with Treatment

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ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of a lung NET and its treatment. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people do not experience the same side effects even when they are given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.

As you prepare to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care” or “supportive care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects of each treatment option for a lung NET are listed in the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.

You may find it helpful to keep track of your side effects so it is easier to explain any changes with your health care team. Learn more about why tracking side effects is helpful.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as sadness, anxiety, or anger, or managing your stress level. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, psychiatrist or psychologist, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Treatment for cancer, including lung NETs, can be expensive. Treatment costs are often a big source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost of medical care stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

Caring for a loved one with cancer

Family members and friends often play an important role in taking care of a person with a lung NET. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis, including:

  • Providing support and encouragement

  • Talking with the health care team

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to and from appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan. Create a caregiving plan with this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print out.

Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.

  • ASCO Answers Managing Pain: Get this 36-page booklet about the importance of pain relief that includes a pain tracking sheet to help patients record how pain affects them. The free booklet is available as a PDF, so it is easy to print out.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on diarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so they are easy to print out.

The next section in this guide is Follow-up Care. It explains the importance of checkups after treatment has finished. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will read about your medical care after treatment for a lung NET is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with a lung NET does not end when active treatment has finished. Your health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your overall health. This is called follow-up care. The follow-up care may be different depending on whether the tumor was removed by surgery.

However, your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. This is important because a lung NET can recur even several years after treatment.

Patients and families should be aware that a lung NET grows slowly and may be similar to a chronic illness, particularly if the lung NET cannot be completely removed by surgery. This means the patient will receive treatment and follow-up care in cycles on an ongoing basis. Learn more about living with chronic cancer and the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. This applies mainly to those who have had a lung NET completely removed by surgery. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given. During this time, it is also important to tell your doctor about any new symptoms as soon as you notice them, such as fatigue, breathing problems, or pain in any part of the body.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan after treatment is completed.

This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their surgeon or oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her, and with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Survivorship

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will read about how to cope with challenges in everyday life after being diagnosed with a lung NET. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having cancer. This is because it is different for everyone.

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain about coping with everyday life.

Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action you choose

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make lifestyle changes.

People recovering from a lung NET are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your health care team to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including those in different age groups.

The next section offers Questions to Ask the Health Care Team to help start conversations with your cancer care team. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • Where in my lungs is the tumor located?

  • Does the disease involve lymph nodes or any distant sites?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is the stage of the tumor? What does this mean?

  • What is the grade? What does this mean?

  • How much experience do you have treating this type of tumor?

  • Do I have carcinoid syndrome? What does this mean? Is my heart affected?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer or to control the cancer? Will it help me feel better?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • What medications will reduce these side effects?

  • Who will be part of my health care team, and what does each member do?

  • Who will lead my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs of cancer care, who can help me?

  • What support services are available to me? To my family?

  • If I have questions or problems, who should I call?

Questions to ask about having surgery

  • Can surgery remove the entire tumor? Why or why not?

  • If not, can surgery be done to debulk the tumor? What is the benefit of this?

  • What type of surgery do you recommend?

  • Will lymph nodes be sampled or removed during surgery?

  • How long will the operation take?

  • How long will I need to be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having therapies using medication

  • Which medication(s) do you recommend?

  • What is the goal of this treatment?

  • How will the treatment be given? Through an IV, orally, or injected?

  • How often will I receive this therapy? For how long?

  • Will I receive it at a hospital or clinic? Or will I take it at home?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term effects of this treatment?

  • What can be done to prevent or manage these side effects?

Questions to ask about having radiation therapy

  • What type of radiation therapy do you recommend?

  • What is the goal of radiation therapy?

  • How many treatments will I need, and how long will each one take?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term effects of having radiation therapy?

  • What can be done to prevent or manage these side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back or grow? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will lead my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Neuroendocrine Tumor of the Lung - Additional Resources

Approved by the Cancer.Net Editorial Board, 12/2019

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about medical care and treatment. This is the final page of Cancer.Net’s Guide to Neuroendocrine Tumor of the Lung. Use the menu to go back and review other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a tumor for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Neuroendocrine Tumor of the Lung. Use the menu to choose a different section to read in this guide.