Newly Diagnosed With Lung Cancer: First Steps

This page is for people just diagnosed with lung cancer and those helping them. It covers the two main types, staging, biomarker tests, symptoms to watch, and questions for your first oncology visit.

Everything downstream depends on this answer. NCI reports that small cell lung cancer, or SCLC, accounts for about 15% of lung cancers. Non-small cell lung cancer, or NSCLC, is defined as any other epithelial lung cancer, meaning cancer that starts in the cells lining the lung.

They are treated in almost opposite ways. NCI notes that SCLC responds well to chemotherapy. It is generally not treated with surgery. NSCLC is usually less sensitive to chemotherapy and radiation. Patients whose NSCLC can be removed may be cured by surgery, or by surgery then chemotherapy.

NCI states one requirement plainly. An experienced lung cancer pathologist must review the tissue before treatment begins. The reason is simple. SCLC can be mistaken for NSCLC under the microscope. Ask whether that review has happened.

American Cancer Society projections for 2026 give 229,410 new lung cancer cases in the United States and 124,990 deaths. Lung cancer is the leading cause of cancer death in this country.

For people diagnosed from 2016 to 2022, the 5-year relative survival rate was 29.5% overall. That single number hides a huge spread. It was 65.5% for disease found at a local stage. It was 38.2% at a regional stage, and 10.5% at a distant stage.

Stage, not the diagnosis itself, is what those numbers track.

NCI names three common types. They are squamous cell carcinoma, large cell carcinoma, and adenocarcinoma. Location tracks type. Squamous cell carcinoma usually begins near a central bronchus, one of the main airways. Adenocarcinoma usually starts in outer lung tissue.

One point matters for people who never smoked. NCI links NSCLC to cigarette smoke overall. Even so, adenocarcinoma is found in patients who never smoked.

With advanced NSCLC, gene testing is not a side detail. NCI lists the gene changes that approved drugs can target. It also lists those with drugs in development.

They are EGFR, ALK, BRAF, ROS1, RET, NTRK1, NTRK2, NTRK3, MET, KRAS, and HER2.

Smoking history shifts the odds. NCI reports that EGFR and ALK variants lead in adenocarcinomas arising in nonsmokers. KRAS and BRAF variants are more common in smokers and former smokers.

The size of that shift is striking. One study looked at 2,142 lung adenocarcinoma samples. EGFR exon 19 deletions and L858R appeared in 52% of tumors from never-smokers. The figure was 15% for former smokers and 6% for current smokers.

ALK has its own number. NCI reports ALK::EML4 fusion genes in 3% to 7% of unselected NSCLC cases. They respond to drugs that block ALK.

Ask two things. Which panel was ordered? And when are results expected? Starting before results return is sometimes needed. It should be a choice, not an accident.

SCLC uses its own vocabulary alongside TNM.

Limited-stage disease stays on the side of the chest where it started. It may also involve the mediastinum (the space between the lungs) or the supraclavicular nodes (lymph nodes above the collarbone). It must fit inside a tolerable radiation field. NCI reports that about 30% of patients have limited-stage disease at diagnosis.

Extensive-stage disease has spread beyond the supraclavicular areas. Any distant metastasis makes it extensive. NCI notes that groups differ on whether fluid around the lung counts as limited or extensive.

NCI is direct about the timing problem. At first diagnosis, roughly two-thirds of patients with SCLC already show signs of spread. Most of the rest have heavy nodal involvement.

NCI lists the steps used to establish the diagnosis. They are history, physical exam, routine lab tests, chest x-ray, chest CT with contrast, and biopsy.

Beyond that, the goal is to define extent. Ask specifically whether brain imaging and a bone assessment are part of your staging, and when they are scheduled.

NCI lists the most common symptoms at presentation. They are worsening cough, chest pain, and hemoptysis, which means coughing up blood. Malaise, weight loss, shortness of breath, and hoarseness round out the list.

Some symptoms come from pressure on nearby structures. Pressure on the esophagus causes trouble swallowing. Pressure on the laryngeal nerves causes hoarseness. Pressure on the superior vena cava causes facial swelling and bulging veins in the head and neck.

Others come from spread. NCI names neurological deficits or personality change from brain metastases, and pain from bone metastases.

A few come from paraneoplastic syndromes. Those are effects of substances the tumor releases. NCI lists hypertrophic osteoarthropathy, which includes clubbing of the fingers. It also lists high calcium driven by parathyroid hormone-related protein. For SCLC, it adds inappropriate antidiuretic hormone secretion and Cushing syndrome.

NCI names the factors linked with a worse outlook. They are higher stage, lung or whole-body symptoms, and tumor size over 3 cm. Spread to several lymph nodes within one nodal station counts, as does vascular invasion. For inoperable disease, poor performance status and weight loss over 10% also worsen the outlook.

One item is missing from that list on purpose. NCI reviewed many analyses of trial data. Advanced age alone has not been shown to change response or survival with therapy.

If age is being used as the reason to withhold treatment, that sentence is worth quoting back.

Smoking is the single most important risk factor. NCI puts a smoker's risk at about ten times that of a lifetime nonsmoker. That term means someone who has smoked fewer than 100 cigarettes. Risk rises with the number of cigarettes, the years of smoking, and a younger starting age.

NCI also reports that stopping reduces precancerous lesions and lowers risk. Former smokers still stay at raised risk for years. Asbestos exposure may multiply the effect of smoking.

There is a second reason to quit after diagnosis. NCI reports that after resection of a lung cancer, there is a 1% to 2% risk per patient per year that a second lung cancer will develop.

One note on screening for family members. NCI states that low-dose helical CT is the only method shown to lower lung cancer deaths. Chest x-ray and sputum cytology have not.

• Facial or neck swelling with bulging veins in the neck. NCI links this to pressure on the superior vena cava. Call 911 or go to the nearest emergency department.
• Coughing up blood that is more than a streak, or that will not stop. Call 911 or go to the nearest emergency department. For a streak of blood, call your care team right away.
• New confusion, personality change, weakness on one side, or a seizure. NCI links these to brain metastases. Call 911 or go to the nearest emergency department.
• Sudden or worsening shortness of breath, or chest pain. Call 911 or go to the nearest emergency department.

If you are on chemotherapy or have low white blood cells, call your care team right away, day or night, for any of these:

• A temperature of 100.4 degrees F (38 degrees C) or higher. CDC says to call your doctor immediately, because fever may be the only sign of an infection.
• Chills.
• A sore throat or new cough.
• Mouth sores.
• Burning or pain when you urinate.
• Redness or swelling where a catheter enters your body.
• Any other sign of infection.

A normal temperature is not permission to wait. If your team cannot be reached quickly, go to an emergency department. Say you are on chemotherapy.

• Is this small cell or non-small cell, and has a lung pathologist confirmed it?
• If NSCLC, which subtype, and what biomarker panel was sent?
• What stage am I, and did staging include brain imaging?
• Is the goal cure, control, or symptom relief right now?
• Is surgery on the table, and if not, why not?
• Should I see a thoracic surgeon and a radiation oncologist, not only a medical oncologist?
• Can you refer me to a tobacco cessation program today?

For related reading, see Cancer Staging, Biomarker Testing and Precision Medicine, and Getting a Second Opinion.

• National Cancer Institute — Non-Small Cell Lung Cancer Treatment (PDQ), Health Professional Version
• National Cancer Institute — Small Cell Lung Cancer Treatment (PDQ), Health Professional Version
• NCI SEER — Cancer Stat Facts: Lung and Bronchus Cancer
• National Cancer Institute — Infection and Neutropenia during Cancer Treatment
• CDC — Watch Out for Fever
• American Cancer Society — Cancer Facts & Statistics