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6 Steps to Take After You’ve Been Diagnosed With Metastatic Non-Small-Cell Lung Cancer
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In its early stages, non-small-cell lung cancer (NSCLC) often causes no symptoms, which means that in many cases it isn’t diagnosed until the cancer has metastasized, or spread from the lungs to other parts of the body. Hearing that you have metastatic NSCLC can be frightening and overwhelming. You may not be sure what to do next or where to turn for help.
As the doctor who often makes the initial diagnosis, Benson Chen, MD, a pulmonary and critical care specialist in San Francisco, understands that people need a few minutes to process the news. “Then I say ‘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,’” he says. “The idea is to have the logistics set — additional testing and procedures scheduled and insurance taken care of. It’s really important just to get them focused on moving their feet and getting to the next place.”
Here are steps you can take following a metastatic NSCLC diagnosis to help improve your outcome and quality of life.
1. Build a coordinated care team — then, select a point person.
“Sometimes, when people are diagnosed with cancer, it’s all they can hear,” says Catherine Credeur, LMSW, an oncology social worker at UT Southwestern Medical Center at Dallas and the past-president of the Association of Oncology Social Work. That’s why it’s important to establish a system of coordination with your oncology team. “Start by asking about what should come first and what’s a priority, says Credeur. “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 whom you can go to as questions arise. “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, and can 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 Dr. 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 mutation 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 you have a mutation that’s targetable with therapy and if there’s 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 towards patient-specific, targeted therapy — meaning, says Chen, that doctors may be able to target your cancer with specific drugs. There’s been a social shift from old-school doctor-only decisions towards an open, fluid conversation. “We focus on patient-centered care,” says Credeur, “which means that patients and family should be very involved in the decision-making process. 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, Credeur suggests asking why. “My first question would be, ‘How did you determine this would be the best treatment for me?’” she says.
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 treatment plan shouldn’t be the only aspect of your life your oncology care team is aware of. “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 choice of treatment. Does your team know about your work schedule or what you do for a living? Do they know if you have people who are dependent on you, like children or an elderly parent? Those aspects should be a part of guiding your treatment decisions.
5. Seek out 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 to 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 will be] 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 for you. The ALA and Lungevity have information about online support groups.
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 most immediate circle — your partner, best friend, and those closest to you — and ask for their support. Then move on to the next layer of people.
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