Symptoms, Tests, and Getting Answers

Symptoms depend on the tumor

Some tumors cause no symptoms and are found during tests for another reason. Others cause symptoms because of their location, their size, or hormones they release. A symptom does not by itself mean cancer, and having no symptoms does not rule it out.

• Digestive symptoms can include persistent abdominal pain, diarrhea, nausea, or a change in bowel habits.
• Flushing and diarrhea can occur with carcinoid syndrome, a hormone-related syndrome that affects some people with neuroendocrine tumors.
• Pancreatic tumors that produce hormones can cause specific problems, such as episodes of low blood sugar. Other pancreatic tumors do not cause a hormone syndrome.

Tell your care team about persistent, changing, or unexplained symptoms, including when they started and what makes them better or worse. NCI: Pancreatic NETs

Know when to seek help

Ask your team which symptoms need a same-day call and how to reach someone after hours. Severe or rapidly worsening symptoms should not wait for a routine appointment. For a medical emergency, call your local emergency number or seek emergency care. Examples include severe difficulty breathing, fainting or severe confusion, severe abdominal pain, or heavy bleeding. If you cannot reach your cancer team about urgent symptoms, seek emergency care.

Severe low blood sugar can cause confusion, seizures, or unconsciousness. Call emergency services if someone is unconscious or having a seizure. Do not give food or drink to an unconscious person. NIDDK: Low blood glucose If you are receiving cancer treatment, call your cancer care team right away for a fever of 100.4°F (38°C) or higher, or at the threshold they give you, including after hours. Ask in advance what to do about dehydration or a sudden change in symptoms. NCI: Infection and cancer treatment If you have carcinoid syndrome, tell your surgical and anesthesia team before a procedure. A rare carcinoid crisis can cause sudden severe symptoms and blood pressure changes, and your clinicians can plan for that risk. NCI: GI neuroendocrine tumors

What tests can and cannot tell you

A clinician may combine your history and examination with blood or urine tests, imaging, and sometimes a biopsy. Which tests make sense depends on the suspected tumor and symptoms. An abnormal result alone does not necessarily mean cancer, and no single test answers every question. NCI: Diagnosing cancer

• Blood or urine tests may look for a hormone or another substance. Medicines, foods, and other conditions can affect some results; ask the ordering team whether preparation is needed.
• CT or MRI can show where a tumor is and whether it appears to have spread. Some people have specialized nuclear medicine scans that look for features of the tumor.
• A biopsy takes a sample for a pathologist to examine. Ask what the sample can establish, its risks, and when results should be available.

After the results

Ask for a copy of the pathology and imaging reports, an explanation in plain language, and a follow-up plan. If the findings are uncertain or unusual, ask whether review by a pathologist or care team experienced with your tumor type would help. NCI: Questions to ask

• What do we know, and what is still uncertain?
• Is another test needed, and what decision would it help us make?
• Who will contact me about results, and when should I call if I have not heard?