Carcinoid or neuroendocrine tumor

Overview

These tumors grow slowly. Some make hormones like serotonin that cause flushing, diarrhea, and wheezing (carcinoid syndrome).

Symptoms

Common signs:

• Flushing
• Facial redness or flushing

Less common

• Diarrhea
• Wheezing
• Belly pain

Look up a symptom: Diarrhea

When to get medical care

Causes

Cell changes.

Does it spread or run in families?

• Cancer isn't contagious. You can't catch it from someone.
• Some cases run in families. Ask whether genetic testing makes sense for you.

Who is more likely to get it

• Adults 50 to 70: Most common
• People with MEN1: Higher risk

Possible complications

• Carcinoid heart disease: Damage to heart valves

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Blood and urine tests:
• Scans:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Avoid flushing triggers like alcohol

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to an oncologist (cancer doctor), often with a surgeon and a radiation doctor.

Living with it

• Keep a simple diary of symptoms, triggers, and medicines to bring to visits.
• Bring a list of your medicines and questions to each visit.
• Ask for a survivorship care plan when treatment ends.
• Gentle activity, like walking, can ease tiredness.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Support groups and helplines

• American Cancer Society: Help 24/7 at 1-800-227-2345, rides to treatment, and support programs.
• National Cancer Institute: Cancer Information Service: Free answers from cancer information specialists: 1-800-422-6237.
• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.

Children, pregnancy, and older adults

• Adults 50 to 70: Most common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Some cancer treatments can harm a baby. Ask about saving eggs before treatment if you want children later.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Many people live years with these tumors.

Many grow slowly.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• What treatment fits my tumor?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Carcinoid or neuroendocrine tumor