6 Steps to Take After You’ve Been Diagnosed With Metastatic Non-Small Cell Lung Cancer

In its early stages, non-small cell lung cancer (NSCLC) often causes no symptoms, which means the disease isn’t diagnosed until the cancer has metastasized (spread to other parts of the body) in many cases. Hearing that you have metastatic NSCLC can be frightening and overwhelming, and you may be unsure about what to do next or where to turn for help.

As a doctor who often makes the initial diagnosis, Tze-Ming (Benson) Chen, MD, division chief of pulmonary and critical care at Alameda Health System in Oakland, California, understands that people need a few minutes to process the news. He tells them, “I get that you are completely stunned right now, but let’s just focus on the next step — nothing more than what we need to do in the next day or two.”

The idea is to set up the logistics, such as scheduling the next tests and processing insurance information. “It’s really important just to get them focused on moving their feet and getting to the next place,” says Dr. Chen.

Here are steps you can take following a metastatic NSCLC diagnosis to feel more in control of your condition and improve your outcome and quality of life.

1. Build a Coordinated Care Team — and Then Select a Point Person

“Sometimes, when people are diagnosed with cancer, it’s all they can hear,” says Catherine Credeur, a care manager/social worker at Willis Knighton Cancer Center in Shreveport, Louisiana, and fellow of the Association of Oncology Social Work. That’s why it’s important to coordinate with your oncology team. “Start by asking about what should come first and what’s a priority,” she says. “This includes arrangements for work, arrangements for family, where you want to receive care, and the logistics of getting your treatment.”

Building your care team means understanding who your point person is and who can answer your questions. “Coming in with a list of questions can be helpful, but knowing who to go to for future questions is invaluable,” Credeur says. “The situation can be overwhelming, and your first conversation with a physician shouldn’t be your last point of contact.”

In addition to your oncologist, your care team may include palliative care specialists, rehabilitation specialists, a dietitian, an oncology social worker, a therapist, and a pharmacist, according to the American Lung Association (ALA). A healthcare professional called a patient navigator can help you organize and communicate with your care team, as well as act as your main point of contact if you have questions about your care.

2. Make Sure You Understand Your Diagnosis

“If you’ve already had a biopsy, the first question you need to ask is, ‘What stage is my cancer?’” says Chen. Knowing how far it has spread determines your treatment options.

“In addition to confirming the diagnosis, the objective of the biopsy is to determine the stage of cancer and, if appropriate, send material for … analysis,” he explains. “If it hasn’t spread far, you may still be able to undergo curative therapy with surgery or radiation. If it’s spread a lot, then your treatment options are limited to getting the tumor under control.”

If your cancer has advanced, ask if it can be targeted with therapy and whether there’s a treatment that might be more effective than standard chemotherapy.

Chen also encourages asking the hard questions. “I think that people should ask, ‘What’s my life expectancy?’” he says. “It’s one of the most challenging questions to have to confront, but it has to be answered as honestly as possible. It’s only fair for the patient to understand what their time horizon is for life. If you know you only have three months left, that’s going to change your perspective on what you want done, what you want to do, and if you even want to pursue treatment.”