Metastatic Lung Cancer: What to Ask

This page is for people with metastatic (stage IV) lung cancer and the people close to them. It explains the terms you may hear and the questions worth asking your care team, based on National Cancer Institute (NCI) information.

Is it small cell or non-small cell? If non-small cell, is it adenocarcinoma or squamous?

These two answers split the treatment world in half. NCI keeps entirely separate summaries for small cell and non-small cell disease.

Ask which one your pathology report says, and ask to see the words.

Non-small cell lung cancer has more targeted drugs than almost any other cancer. NCI's summaries cover EGFR, ALK, ROS1, BRAF V600E, KRAS G12C, MET exon 14 skipping, RET, NTRK and HER2.

Each of those has drugs attached, so a result can change which treatment is offered first.

NCI describes osimertinib as preferred over older EGFR drugs for advanced EGFR-positive disease, with longer progression-free and overall survival and less spread to the brain. "EGFR-positive" is not one thing, though. The common sensitizing changes behave differently from exon 20 insertions and other uncommon variants. Some people are now offered osimertinib with chemotherapy or another drug rather than alone. Ask which exact variant your report names.

Ask for your tumor proportion score as a percentage. NCI reports trial results split by whether that score is above 1%, and by higher cut-offs.

That number helps decide between immunotherapy alone and immunotherapy combined with chemotherapy.

Lung cancer reaches the brain often, and often before symptoms start.

NCI says patients at risk of brain metastases may be staged with CT or MRI. In one trial of people with no neurological symptoms, MRI trended toward finding more than CT did.

If brain spread is found, NCI describes surgery with whole-brain radiation for a single accessible metastasis, and stereotactic radiosurgery for spots that cannot be removed. Read those as examples rather than a pathway. Several things shift the answer: the number and size of the spots, whether they are causing symptoms, and whether your tumor carries a change with a drug that reaches the brain. Whole-brain radiation is also used more sparingly than it once was. Ask for a radiation oncologist to review your scans.

• Is this small cell or non-small cell, and which subtype?
• What gene testing has been sent, and what does the panel cover?
• How long will those results take, and should we wait for them?
• What is my PD-L1 tumor proportion score as a percentage?
• Have I had brain imaging, and was it CT or MRI?
• If I have an EGFR change, would osimertinib be used alone or with chemotherapy?
• If there are brain spots, does radiation come before or after the drug?

This is a real tension and worth naming out loud.

Ask your team whether it is safe in your case to wait for the gene results before starting, and how long they expect the results to take. Where someone is well and stable, waiting can protect a better option. Where someone is unwell or the disease is moving fast, treatment often starts first and is switched later. That is a same-day question for your oncologist, not a rule of thumb.

Ask which situation you are in, and what the plan is if a driver mutation turns up after treatment starts.

• Call 911 or go to an emergency department if you cough up more than streaks of blood, or if breathlessness or chest pain comes on suddenly and severely. Go too for a seizure, sudden weakness or numbness down one side, sudden confusion, or a change in speech or vision, which can mean spread to the brain. Go if your face, neck or arms swell together with breathlessness or coughing, which can mean a large vein in the chest is blocked. Go for new leg weakness or loss of bladder or bowel control with back pain. Do not drive yourself.
• Call your care team right away, at any hour, if your temperature reaches 100.4°F (38°C) or higher, or shaking chills start, whatever treatment you are on. On chemotherapy, CDC says to call your doctor immediately, because an infection can be life-threatening. On a targeted tablet such as osimertinib, MedlinePlus also lists fever as a reason to call immediately. On immunotherapy, a fever with new cough or breathlessness can mean the drug has inflamed the lungs. Can't reach your team quickly, or have any of the emergency signs above? Go to an emergency department. Tell them you are being treated for cancer.
• Call your care team right away if you are on pembrolizumab, nivolumab, atezolizumab or durvalumab and you get a new or worsening cough or breathlessness, diarrhea, or blood or mucus in your stool. MedlinePlus lists these as reasons to call immediately on pembrolizumab.
• Call your care team right away if you are on immunotherapy and feel unusually tired, weak or cold, or develop a new rash, which can mean the drug is affecting the thyroid or skin. MedlinePlus lists these as reasons to call immediately on pembrolizumab. On immunotherapy or an EGFR drug, call right away for a rash that blisters or peels.
• Call your care team the same day if you have a headache that is worse in the morning or when you cough, especially with nausea or vomiting.
• Call your care team within a day or two if you are on an EGFR or ALK drug and develop a mild new rash, a sore mouth, or diarrhea that is new. Report new persistent bone pain and new hoarseness in the same window.

Next steps: Biomarker Testing, Cancer Staging, Clinical Trial vs Standard Treatment, and Palliative Care.

• NCI PDQ — Non-Small Cell Lung Cancer Treatment (Patient Version)
• NCI PDQ — Non-Small Cell Lung Cancer Treatment (Health Professional Version)
• NCI PDQ — Small Cell Lung Cancer Treatment (Patient Version)
• NCI PDQ — Cardiopulmonary Syndromes (Patient Version)
• NCI — Immune Checkpoint Inhibitors
• NCI — Metastatic Cancer
• CDC — Watch Out for Fever (Preventing Infections in Cancer Patients)
• MedlinePlus — Pembrolizumab Injection
• MedlinePlus — Osimertinib
• StatPearls via NCBI Bookshelf — Spinal Cord Compression