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    Types of Neuroendocrine Tumors and Their Symptoms

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    Reviewed by Jennifer Robinson, MD

    When you have neuroendocrine tumors (NETs), you can get a lot of different symptoms, from shortness of breath to headaches to cramps in your belly. Why the variety? It's all about location. Your tumors can show up in lots of places, and where they're growing makes a big difference to how you feel.

    The trouble with finding NETs is they often don't cause symptoms at first. "Because some of these tumors can be so slow growing, they may actually not cause problems for a long time," says Emily Chan, MD, PhD, medical oncologist at the Vanderbilt-Ingram Cancer Center. "If something grows slowly, the other tissues and cells around it have time to accommodate it."

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    Even if you do feel like something's not right, you might not connect it with NETs. "The symptoms can be vague," says Thomas O'Dorisio, MD, director of neuroendocrine tumor clinics at the University of Iowa. "So [the tumor is] often missed for a long time."

    Ellen Reed, who lives in Alberta, Canada, learned this lesson firsthand. In 1996, she began to have diarrhea and her face got flushed. She thought her symptoms were due to the stress of caring for her mother, who'd had a stroke. She figured she'd feel better once her tension eased up. "My symptoms didn't go away," she says.

    Reed didn't even consider it might be a NET until her brother, who'd been diagnosed with a type called a carcinoid tumor, said her symptoms sounded like his own. "He told me, 'Ellen, it's like reliving what I went through.'"

    Types of NETs

    These tumors affect a type of cell called a neuroendocrine cell. NETs can form anywhere in your body where you have those, and they're often named based on where they grow.

    Carcinoid tumors are a type of NET that grows in the:

    • Digestive system: stomach, small intestine, colon, or rectum
    • Lungs
    • Pancreas
    • Ovaries or testicles (rarely)

    You may hear your doctor refer to carcinoid tumors as "well-differentiated." That's just a technical way of saying they look similar to normal cells under a microscope. They often grow slowly.

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