6 Steps to Take After You’ve Been Diagnosed With Metastatic NSCLC

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.”

3. Speak Up About Your Treatment Preferences

Lung cancer therapy has evolved dramatically toward patient-specific targeted therapy, meaning that doctors may be able to target your cancer with specific drugs, says Chen. There’s been a social shift from old-school doctor-only decisions toward an open, fluid conversation.

“We focus on patient-centered care, which means that the patients and their family should be very involved in the decision-making process,” says Credeur. “It’s a mutual decision between the patient, the family, and the care team. Of course, the physician is a part of that, but that team also includes your social worker, the clinic nurse, and a nurse practitioner or physician assistant.”

If a course of treatment is recommended, she suggests asking why. “My first question would be, ‘How did you determine this would be the best treatment for me?’”

And don’t be afraid to seek a second opinion if you have questions about your treatment. Talking to another doctor about your test results and treatment options can help you feel more confident about your care plan, according to the American Cancer Society.

4. Tell Your Care Team About Yourself

Your oncology care team should be familiar with aspects of your life other than your treatment plan. “They know your disease, imaging, and pathology, but do they know a little about you personally?” Credeur asks.

Your daily habits should play a role in your treatment choice. Does your team know your work schedule and what you do for a living? Do they know if you have people who are dependent on you, such as children or an elderly parent? Those aspects should help guide your treatment decisions.

5. Seek Support Groups

If you’ve been diagnosed with metastatic NSCLC, you may feel like nobody understands what you’re going through. Joining a support group is one way to feel less alone and get valuable information and advice about living with the disease.

“Ideally, your cancer center will have support groups made up of survivors and those undergoing treatment, and [people] willing to be there for each other,” Chen says. “That’s a huge quality-of-life boost that many people find very helpful.”

You can also ask your doctor or social worker to recommend a support group in your area. If you don’t feel physically able to attend an in-person support group, an online one may be a good option. You can get information online about support groups from the ALA and LUNGevity, a support network for people with lung cancer.

6. Decide Who You Want to Tell

After being diagnosed, you might feel compelled to share your situation with others. Credeur recommends starting slowly. You can always divulge more information later.

“If it’s a very public announcement, you’re going to get a flood of people giving you their opinions and perspectives,” she says. “Sometimes you need to be able to focus on yourself first.”

Once you decide to share the news, work your way from the inside out. Start with your inner circle — your partner, your best friend, and other people who are closest to you — and ask for their support. Then move on to the next level of people in your life.