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 Seattle Cancer Care Alliance (SCCA), 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 SCCA and Fred Hutchinson Cancer Research Center. Through studies, patients like you get access to promising new therapies that may not be available elsewhere.

SCCA: 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 SCCA, our NET experts come together at our Neuroendocrine Tumor Board to review your case and design the best treatment plan for you.

Diagnosing NETs

Many people with NETs first come to SCCA 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 SCCA, 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. 

SCCA 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 SCCA 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 SCCA, we provide all the types of tests and imaging you may need.

Diagnosing NETs

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

Care at SCCA

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 SCCA, 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.

Treatment

SCCA 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 SCCA 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.

Providers

At SCCA, 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. 

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. 

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.