Gastrointestinal stromal tumor (GIST)

Overview

GISTs come from special cells in the gut wall and are usually driven by KIT or PDGFRA gene changes.

Small GISTs may only need surgery. Larger or higher-risk ones are treated with imatinib, a targeted pill, before or after surgery.

Symptoms

Common signs:

• Black stools or anemia from bleeding
• Belly pain or feeling full quickly

Less common

• Lump in the belly
• Vomiting blood
• Tiredness

Look up a symptom: Black or tarry stool · Fatigue · Feeling full after a few bites, or vomiting old food · Pale skin · Stomach pain

When to get medical care

Causes

Changes in a cell's genes that make it grow out of control. Most happen by chance; some are linked to the risk factors below or to inherited genes.

Does it spread or run in families?

• Cancer isn't contagious. You can't catch it from someone.

Who is more likely to get it

• Neurofibromatosis type 1
• Inherited GIST syndromes

Diagnosis

Tests look for the cause. Many people checked for these symptoms turn out not to have cancer.

Questions you may be asked

• When symptoms started and whether they're getting worse
• Family history of cancer
• Past illnesses, treatments, and exposures

The exam

A physical exam, focused on where the symptoms are.

Tests

Tests, if needed:

• CT scan:
• Endoscopy with ultrasound:
• Biopsy with KIT testing:

Treatment

Treatment depends on the type, stage, and your overall health. A cancer care team makes a plan with you.

Self-care

• Write down symptoms and when they started
• Bring someone with you to appointments
• Ask for copies of test results
• Ask about clinical trials: they can offer new treatments
• Quit smoking: it helps at every stage

Surgery and targeted pills like imatinib.

Prevention

To lower risk or find it early:

• No known way to prevent it

Which doctor treats this

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

Living with it

• Keep a simple notebook of symptoms, medicines, and questions for visits.
• Ask for a survivorship care plan when treatment ends.
• Gentle activity, like walking, can ease tiredness.
• A cancer diagnosis can affect mood. Tell the care team if you or your family 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.

Back to school, work, or sports

• Many people keep working during or after treatment.
• Ask about changes that help, like flexible hours. Workers may be covered by the ADA.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your cancer team. Some treatments can harm a baby.
• Ask about saving eggs or sperm before treatment if you may want children later.

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, like fever during treatment.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Outlook depends on the type and stage. Cancers found early are usually easier to treat, and treatments keep improving.

Support is available: ask about social workers, nutrition help, and support groups.

Getting ready for your visit

Bring a list of symptoms and medicines.

What to bring

• A list of medicines and supplements
• Notes on when symptoms started
• Past test results and scans

Questions to ask

• What is the risk it will come back?
• How long should I take imatinib?
• What stage is it, and what are the treatment options?
• Are there clinical trials for me?

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 Gastrointestinal stromal tumor (GIST)