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The Patient Journey in Non–Small-Cell Lung Cancer: An Overview

August 2020 Vol 6 No 4
Blanca A. Ledezma, MSN, NP
Nurse Practitioner, Oncology & Hematology
UCLA Santa Monica Hematology Oncology, California
Edward B. Garon, MD
Medical Oncologist, Oncology & Hematology
David Geffen School of Medicine at UCLA, California
Support for medical writing of this article was provided by Timothy Silverstein, PhD. Financial support for the medical editorial assistance was provided by Novartis Pharmaceuticals Corporation.


Non–small-cell lung cancer, or NSCLC, is the most common form of lung cancer, accounting for about 80% to 85% of all lung cancer cases.1 Given the complexity of cancer, the rapid development of new treatments, and the large amount of information available, it may be a challenge for patients to find materials that can help them to better understand their disease.

The goal of this 4-part series of articles is to present brief overviews of concepts that may be important to patients with NSCLC and to their caregivers. In this last part of the series, we examine the full patient journey, from diagnosis through treatment, and provide a list of questions for patients to ask their doctors for more information.

Symptoms and Initial Testing

Lung cancer may not cause any visible symptoms, particularly in the early stages of the disease.2 Most patients with NSCLC are diagnosed when the tumor grows, takes up space, or begins to cause problems with parts of the body near the lungs. The common symptoms that may prompt a doctor to suspect lung cancer are shown in the Box. Remember that many of these symptoms are more likely to be caused by something other than lung cancer.

The most common symptoms of lung cancer are2:

  • Fatigue
  • Persistent cough
  • Shortness of breath
  • Chest pain
  • Loss of appetite
  • Coughing up phlegm or mucus
  • Coughing up blood
  • Unintentional weight loss
  • Hoarseness

Consider seeing your doctor right away if you have any of these symptoms so the cause can be found and treated early, if needed.

A doctor who suspects that a patient has lung cancer will perform a full clinical evaluation, which includes a full physical examination and laboratory tests. These tests can include blood tests and analysis of the patient’s sputum or phlegm.3

Imaging tests will also be ordered, and may include x-rays, computed tomography (CT) scans, positron emission tomography (PET) scans, or magnetic resonance imaging (MRI), to evaluate the position and extent of the cancer.4

Even after all these tests are performed, the only way to confirm a diagnosis of lung cancer is with a tissue biopsy.4 Biopsies can be performed by various medical specialists, including surgeons, pulmonologists, and interventional radiologists.

There are also many ways that a doctor can collect this tissue, depending on the location of the suspected tumor and other patient characteristics. Common methods of accessing tumor tissue include bronchoscopy (meaning passing a thin, flexible tube down the windpipe and into the lung), needle aspiration (passing a needle through the chest wall), and via incision (making a cut in the chest wall).

Diagnosis and Staging

Suspected tumor tissue will be sent to the pathologist to confirm that the tissue is cancerous. By analyzing the sample under the microscope (that is, performing histology), the pathologist will be able to confirm the diagnosis of NSCLC, determine the cells in which the cancer originated (the histologic subtype), and assess the likely aggressiveness of the tumor.5

Evaluation of the pathologist’s report in combination with the imaging tests allows the patient’s care team to determine the stage of the cancer. Staging the cancer requires assessing the size of the tumor, whether it has spread to the lymph nodes, and whether it has metastasized (spread), which is based on the imaging results.6

For patients with early-stage cancers (stage I and stage II), no additional biomarker tests are usually performed, because these tumors are generally treated with local therapies that directly target the tumor, such as surgery without immunotherapy or targeted therapy.

However, for patients with locally advanced (stage III) or metastatic (stage IV) cancers, further histologic examination will allow the pathologist to test the cells for a biomarker called PD-L1, which is expressed on the cells of some cancer cells and can help the treating team decide if immunotherapy with a PD-L1 inhibitor is appropriate.5

The pathologist will also use the biopsy sample to perform comprehensive testing for other biomarkers, including the driver gene mutations (alterations) EGFR, ALK, BRAF, or ROS1.5 Biopsy samples that show the presence of these mutations suggest that the patient may benefit from receiving a targeted therapy for that mutation.5


Depending on the stage of the cancer, its biomarker profile, and the patient’s overall health, doctors may use various methods of treatment. Many treatments can be used alone or in combination with other therapies. Some common treatments for NSCLC include:

  • Surgery: The cancer is physically removed from the body by a surgeon7
  • Chemotherapy: Drug treatment that attacks fast-growing cells, such as cancer8
  • Radiation: High-energy rays or particles are used to kill cancer cells9
  • Targeted therapy: A drug treatment that targets the genetic changes, or mutations, in the cancer cells, and is used to slow their growth and kill them10
  • Immunotherapy: Drug therapy that uses the body’s own immune system to fight cancer.11,12

Patients may also receive other therapies that are not listed here. Furthermore, new therapies for NSCLC are continuing to be investigated and developed. Interested patients should ask their healthcare team if they are eligible to join any ongoing clinical trials with new therapies.


Regardless of the treatment regimen, patients with NSCLC will be monitored by their doctor during their treatment to manage any symptoms and to help minimize any side effects. All patients will also have ongoing follow-up, which may include regular imaging, to determine if there is disease recurrence or progression of the tumor.4

Imaging may also be used to evaluate the cancer’s response to the treatment. For patients who have signs of disease recurrence or progression, it may be decided to perform another biopsy to reevaluate their best treatment options.4

Your Care Team

In moving from first symptoms to diagnosis and later to treatment and monitoring, patients will see several medical specialists being added to their care team. Depending on their individual circumstances, a patient’s care team may include a larger or a smaller team of specialists, including some of the more common specialists listed below:

Primary care physicians are the healthcare professionals most people first visit when they do not feel well or have unusual health symptoms. On suspicion or confirmation of cancer, this primary care physician will refer the patient to a specialist.

Registered nurses (RNs) and nurse practitioners (NPs) work closely with the entire care team helping to assess, educate, and treat patients with cancer and their families. Nurse practitioners have advanced training and clinical experience in a certain area of medical and nursing practice and work closely with doctors and patients to diagnose diseases and manage care.

Radiologists are doctors who are experts in interpreting the findings on x-rays, CT scans, PET scans, and MRI scans before, during, and after treatment to help doctors diagnose and monitor the disease progression and response to treatment. Interventional radiologists are often responsible for obtaining tissue biopsies.

Pulmonologists are doctors who specialize in the diagnosis and treatment of lung diseases. They can perform tests and biopsies, and they treat patients who have respiratory issues related to lung cancer.

Surgeons have special training in performing surgery. A thoracic surgeon specializes in surgeries of the chest.

Pathologists are doctors who evaluate biopsy samples to determine if the patient has lung cancer, as well as establish the cancer type, the tumor stage, and the presence of biomarkers.

Medical oncologists are doctors who specialize in diagnosing and treating cancer, using chemotherapy and other drugs. Medical oncologists are different from surgical oncologists, who specialize in performing surgery to remove tumor and cancer cells.

Other specialists that patients may encounter include neurosurgeons, oncology social workers, orthopedic surgeons, palliative care specialists or pain management specialists, physical therapists, psychiatrists or psychologists, and respiratory therapists.

For additional support, review one of the many patient information and advocacy groups shown in the Box below.

For more information or support for patients with NSCLC, consult the following advocacy groups:

American Cancer Society

Free to Breathe


Lung Cancer Alliance

Lung Cancer Foundation

Lung Cancer Foundation of America

Questions for Your Doctor

  1. What type of NSCLC do I have?
  2. What is the stage of my NSCLC? What does this mean?
  3. Can you explain my pathology report (laboratory test results) to me?
  4. Will my tumor be tested for molecular driver mutations?
  5. What mutations does the tumor have? What does this mean?
  6. Do my family members have an increased risk for NSCLC?
  7. Should I get a second opinion, and, if so, how do I do that?
  8. What supportive treatments are available to me?
  9. Who do I contact if I have questions, side effects, or an emergency? What about after hours or holidays?
  10. Should I enroll in a clinical trial? If yes, how do I do that?


  1. Dela Cruz CS, Tanoue LT, Matthay RA. Lung cancer: epidemiology, etiology, and prevention. Clinics in Chest Medicine. 2011;32(4):605-644.
  2. American Cancer Society. Signs and symptoms of lung cancer. Revised October 1, 2019. Accessed February 3, 2020.
  3. American Cancer Society. Tests for lung cancer. Updated May 11, 2020. Accessed July 10, 2020.
  4. European Society for Medical Oncology. Non-small-cell lung cancer (NSCLC): an ESMO Guide for Patients. 2019. Accessed February 3, 2020.
  5. Gregg JP, Li T, Yoneda KY. Molecular testing strategies in non-small cell lung cancer: optimizing the diagnostic journey. Translational Lung Cancer Research. 2019;8(3):286-301.
  6. National Cancer Institute. Cancer staging. March 9, 2015. Accessed February 3, 2020.
  7. National Cancer Institute. Surgery to treat cancer. April 29, 2015. Accessed January 27, 2020.
  8. American Cancer Society. Chemotherapy for non-small cell lung cancer. Updated May 27, 2020. Accessed July 10, 2020.
  9. National Cancer Institute. Radiation therapy to treat cancer. January 8, 2019. Accessed January 27, 2020.
  10. American Cancer Society. How targeted therapies are used to treat cancer. Updated December 27, 2019. Accessed January 27, 2020.
  11. Hirsch FR, Scagliotti GV, Mulshine JL, et al. Lung cancer: current therapies and new targeted treatments. The Lancet. 2017;389(10066):299-311.
  12. American Cancer Society. How immunotherapy is used to treat cancer. Updated December 27, 2019. Accessed January 27, 2020.

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