Neuroendocrine tumors

Neuroendocrine tumors overview

Neuroendocrine tumors (NETs) can begin almost anywhere in the body. They start from cells that make and release hormones.

Many physicians never see a patient with this rare type of cancer. But at Fred Hutchinson Cancer Center, we do. We treat hundreds of people with NETs each year. Our experts provide all standard therapies and are national leaders in NET care and research.

Many of our patients take part in clinical trials. These studies are led by world-renowned physicians from Fred Hutch. Through studies, patients like you get access to promising new therapies that may not be available elsewhere.

Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies.

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Fred Hutch: A Leader in NETs Treatment

Care for people with NETs is often complex. The treatment that is right for you may be different than for someone else. This is true even if you have the same type and stage of cancer. To get the best care, it is important to see a team with NET expertise. Your team should review your case in detail. At Fred Hutch, our NET experts come together at our Neuroendocrine Tumor Board to review your case and design the best treatment plan for you.

Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

Diagnosing NETs

Many people with NETs first come to Fred Hutch after being diagnosed by a physician somewhere else. Often, this happens when NETs are found during an X-ray or treatment done for some other reason.

At Fred Hutch, we also see people whose physicians suspect a NET but are not sure. NETs can be difficult to diagnose. They may cause no symptoms at all. When they do cause symptoms, they can mimic many other conditions.

Diagnosing NETs almost always involves a biopsy. This shows whether you have cancer and which type. It also allows us to compare your cancer cells to normal cells. This reveals your tumor differentiation and grade. If the cancer cells appear more normal, the tumor is called well differentiated. If the cancer cells appear less normal, the tumor is called poorly differentiated.

Grade refers to how quickly the cancer cells grow. Lower-grade cancers are usually slower growing. Higher-grade cancers tend to grow faster. This helps guide your treatment plan.

Fred Hutch pathologists have special expertise with NET biopsies. They know how to analyze these biopsies and get the level of detail your medical oncologist will need. If you had a biopsy elsewhere, at Fred Hutch we check the results. Our pathologists review the pathology slides and report.

Our radiologists and nuclear medicine specialists review your scans. We do this to confirm your diagnosis and to plan treatment that precisely matches your needs. This includes figuring out where your NET started, such as in your intestine, pancreas or lung.

Another important detail is whether your NET makes and releases hormones. NETs that do this can cause symptoms. These are called functional NETs. You may have tests, like blood and urine tests, to check your hormone levels.

At Fred Hutch, we provide all the types of tests and imaging you may need.

Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Differentiation In cancer care, differentiation describes how much a tumor looks like the normal tissue it came from. It is used in tumor grading systems, which are different for each type of cancer. In biology, describes the processes by which immature cells become mature cells with specific functions. In cancer, this describes how much or how little tumor tissue looks like the normal tissue it came from. Well-differentiated cancer cells look more like normal cells and tend to grow and spread more slowly than poorly differentiated or undifferentiated cancer cells. Differentiation is used in tumor grading systems, which are different for each type of cancer. Grade In cancer, a grade is a description of a tumor based on how abnormal the cancer cells and tissue look under a microscope and how quickly the cancer cells are likely to grow and spread. In cancer, a grade is a description of a tumor based on how abnormal the cancer cells and tissue look under a microscope and how quickly the cancer cells are likely to grow and spread. Low-grade cancer cells look more like normal cells and tend to grow and spread more slowly than high-grade cancer cells. Grading systems are different for each type of cancer. They are used to help plan treatment and determine prognosis. Also called histologic grade and tumor grade. Imaging In medicine, a process that makes pictures of areas inside the body. Imaging uses methods such as X-rays (high-energy radiation), ultrasound (high-energy sound waves) and radio waves. Medical oncologist A physician who has special training in diagnosing and treating cancer in adults using chemotherapy, hormonal therapy, biological therapy and targeted therapy. A physician who has special training in diagnosing and treating cancer in adults using chemotherapy, hormonal therapy, biological therapy and targeted therapy. A medical oncologist is often the main health care provider for someone who has cancer. A medical oncologist also gives supportive care and may coordinate treatment given by other specialists. Pathologist A physician who has special training in identifying diseases by studying cells and tissues under a microscope. Radiologist A physician who has special training in creating and interpreting pictures of areas inside the body. The pictures are made with X-rays, sound waves or other types of energy. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

Diagnosing NETs

Diagnosis is about more than simply whether you have a NET. The details of your disease matter.

Your first appointment

From the first time you come to see us, your neuroendocrine tumor team begins getting to know you and your family. What are your questions? What are your concerns?

At your first appointment, your medical oncologist also explains your disease. We outline how we treat the type of NET you have and which tests you need to help us shape your individual care. Before you leave, we make sure you understand the next steps.

Medical oncologist A physician who has special training in diagnosing and treating cancer in adults using chemotherapy, hormonal therapy, biological therapy and targeted therapy. A physician who has special training in diagnosing and treating cancer in adults using chemotherapy, hormonal therapy, biological therapy and targeted therapy. A medical oncologist is often the main health care provider for someone who has cancer. A medical oncologist also gives supportive care and may coordinate treatment given by other specialists.

NETs First Appointment

Care at Fred Hutch

How does treatment work here?

The safest, most effective and most widely accepted therapies for cancer become the “standard of care.” For many patients, these form the foundation of treatment. At Fred Hutch, we provide all standard therapies for NETs and know how to select and sequence them to give you the best outcome.

Our physicians and researchers are always asking how we can make NET treatments better and reduce side effects further. This is why we conduct clinical trials. Through these studies, we are able to offer you therapies not offered everywhere. A trial therapy today may become the new standard of care tomorrow.

Along with treating your cancer, a group of world-class professionals is here to support you. This team includes nurses, dietitians, physical therapists, social workers, psychologists and palliative care specialists. We integrate supportive care services to promote your well-being in every sense.

Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies.

Treatment Plan and Process

Fred Hutch physicians with knowledge and experience in all types and stages of NETs design your personalized treatment plan and provide your care.

NET treatment can vary widely from person to person. Often, we have many options to choose from. For you, options may include surgery, chemotherapy, targeted therapies, peptide receptor radionuclide therapy, medicines to control excess hormones, radiation therapy or special therapies for liver NETs. Not everyone needs all these. We select and combine treatments to fit your unique case.

As you go through treatment, your needs evolve, so your care at Fred Hutch evolves too. For instance, your care team helps to relieve any symptoms or side effects you have. We may suggest adding a new therapy. Even after your NET treatment is complete, we keep seeing you to protect your health over the long term.

Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Radiation therapy The use of high-energy radiation from X-rays, gamma rays, neutrons, protons and other sources to kill cancer cells and shrink tumors. The use of high-energy radiation from x-rays, gamma rays, neutrons, protons and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy or brachytherapy). Systemic radiation therapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that travels in the blood to tissues throughout the body. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Targeted therapy A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. Some targeted therapies block the action of certain enzymes, proteins or other molecules involved in the growth and spread of cancer cells. Other types of targeted therapies help the immune system kill cancer cells, or they deliver toxic substances directly to cancer cells and kill them. Targeted therapy may have fewer side effects than other types of cancer treatment. Most targeted therapies are either small molecule drugs or monoclonal antibodies. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

Treatment for NETs

For caregivers

When someone close to you is diagnosed with a NET, you might step into the role of caregiver. On a practical level, this can mean many things, from cooking meals to helping with medical decisions. It probably also means dealing with emotions and stress yourself.

In our eyes, you are a true member of a patient’s care team. We see every day that your presence and your support make a difference. We also see that what your friend or family member is going through affects you too.

Part of our mission is to help you take care of yourself. Doing so is good for your own physical, mental and emotional health. It also helps you give your best to your loved one. Our social workers, chaplains and Patient and Family Resource Center can help.

Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting.

For Caregivers

Resources for Caregivers

Other Resources

Care team

At Fred Hutch, a team of dedicated people surrounds you and your family to give you the highest level of care and support. You are part of the care team too. Our patients are at the center of everything we do.

NETs Care Team

Care team

Research

Our scientists and physicians are constantly refining current treatments for NETs and developing new ones. We are a national leader in neuroendocrine tumor research.

NETs Research

Research

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