Understanding Your Neuroendocrine Tumor Diagnosis

How to Decode What your Doctor is Saying

Shock, fear, and anxiety accompany a neuroendocrine tumor diagnosis. On top of the emotional response comes cognitive confusion. A blizzard of medical terms, complicated tests, and different classifications may start flying around during every doctor’s visit.  What’s the difference between tumor grade, stage, and site? And why do they matter?

Listen to neuroendocrine tumor experts from around the country explain what these complicated terms mean.

Results of a global survey of close to 2,000 NET patients published in 2016 found that more than one in three patients did not know or had not been told their tumor grade.

“It’s important for every patient to understand his or her diagnosis,” said Elyse Gellerman, Neuroendocrine Tumor Research Foundation (NETRF) Chief Executive Officer. “But the learning curve is deep and the terminology can be intimidating. That’s why we want to be there to help people understand NETs.”

NETRF offers web-based information, free patient and caregiver conferences, and a video library to help people better understand this uncommon cancer type.

What does tumor grade mean?

Tumor 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. Tumor grade is determined using laboratory tests of tumor cells. Generally, a lower grade indicates a better prognosis. A higher-grade cancer may grow and spread more quickly and may require immediate or more aggressive treatment.

If the cells of the tumor and the organization of the tumor’s tissue are close to those of normal cells and tissue, the tumor is called “well-differentiated .” These tumors tend to grow and spread at a slower rate than tumors that are “undifferentiated” or “poorly differentiated,” which have abnormal-looking cells and may lack normal tissue structures. Based on these and other differences in microscopic appearance, doctors determine the differentiation of a tumor.

Patients should talk with their doctor for more information about tumor grade and how it relates to their treatment and prognosis.

What does cancer stage mean?

Stage refers to the extent of your cancer, such as how large the tumor is, and if it has spread. Knowing the stage of your cancer helps your doctor:

  • Understand how serious your cancer is and your chances of survival.
  • Plan the best treatment for you.
  • Identify clinical trials that may be treatment options for you.
    Male patient in CT scanner
    Cancer stage is often determined with imaging tests.

To learn the stage of your disease, your doctor may order x-rays, lab tests, and other imaging tests or diagnostic procedures. Doctors may use numbers to describe your cancer stage.

  • Stage 0 —  Abnormal cells are present but have not spread to nearby tissue. These abnormal cells may not yet be cancer, but may become cancer.
  • Stage I, Stage II, and Stage III —  Cancer is present. The higher the number, the larger the tumor and the more it has spread into nearby tissues or organs.
  • Stage IV —  Cancer has spread to distant parts of the body.

Doctors may also use words to describe the stages of cancer.

  • In situ — Abnormal cells are present but have not spread to nearby tissue.
  • Localized — Cancer is limited to the place where it started, with no sign that it has spread.
  • Regional — Cancer has spread to nearby tissues or organs.
  • Distant — Cancer has spread to distant parts of the body.
  • Unknown — There is not enough information to figure out the stage.

The words early stage and late stage may also be used. The stage of your cancer affects your treatment options. In neuroendocrine tumors, surgery is often considered for tumors that have not spread to nearby tissue or organs. Doctors may “restage” cancer if it comes back or spreads to other parts of the body.

What does “primary site” mean?

Neuroendocrine tumors can form in many different places in the body — anywhere there are neuroendocrine cells. The primary site is used to describe the first place cancer cells formed. Sometimes tumors that begin in a certain place, such as the small intestine, share common characteristics. This knowledge of tumor type helps doctors develop standardize approaches for testing and treatment, based on past research and clinical practice. But it is not always possible to identify the primary site. In those cases, it is called a cancer of “unknown primary.”

Check out NETRF’s YouTube channel for patient videos on many other topics.

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2 years ago

Can the grade change over time even if the primary was considered a Grade 2? Can different tumors be different grades and spread rate?

Nohemi Lucero
9 months ago

You cannot imagine how helpful this was, I am so grateful I found this website. I recently had my appendix removed and was told it had a NET. I am currently talking to my doctor about follow up. I want to know if I have other tumors. So many questions and scary experience. I am hopeful

9 months ago
Reply to  Nohemi Lucero

Thank you!
So glad to hear. Also, check out our podcast https://netrf.org/podcast/ and order a copy of our patient guide https://netrf.org/for-patients/guide/

Mina B
9 months ago
Reply to  Nohemi Lucero

My daughter just had her appendix removed also and we were told there was the same tumor. They referred us to an oncologist. Are there more tests they have to run or since it was in her appendix, did they get it all?

8 months ago
Reply to  Mina B

Mina, Here is a list of imaging tests. The Gallium-68 is preferred by many NET specialists. https://netrf.org/for-patients/nets-info/diagnostic-tests-for-neuroendocrine-cancer/imaging/
Best wishes,

5 months ago

Is a carcinoid tumor of the lung still considered a cancer if not malignant?

5 months ago
Reply to  Cowgirl90

In some cases, a neuroendocrine tumor can be considered benign or “not cancerous.” The term “carcinoid” is sometimes used by some to mean “cancer-like.” Your doctor will look at your laboratory results to classify the tumor by grade. https://www.cancer.net/cancer-types/neuroendocrine-tumor-lung/stages-and-grades. Write down your questions in order of importance for your next visit with your doctor to make sure you have all the information you need about your diagnosis. Here’s some additional reading. https://www.cancer.org/cancer/lung-carcinoid-tumor.html If you aren’t getting all the information you need, you could consider getting a second opinion.