Just diagnosed with Non-Small Cell Lung Cancer — what should I do first

First Steps After an NSCLC Diagnosis

I'm sorry you're facing this diagnosis. Here's what you should focus on right now to get organized and informed:

Immediate Priorities

1. Understand Your Complete Diagnosis Your care team needs to determine several key things about your cancer:

• Stage (how far it has spread) - This is critical because it determines your treatment options
• Biomarkers (special features of your cancer cells) - These are important because certain mutations like EGFR changes respond to specific targeted therapies
• Histologic type (what kind of lung cells the cancer came from - adenocarcinoma, squamous cell, etc.)

According to the NCCN Guidelines for Non-Small Cell Lung Cancer, your doctors will order imaging studies like CT scans and PET/CT scans, and may do a brain MRI to check if cancer has spread to your brain.

2. Get Your Tissue Tested Thoroughly Make sure your biopsy sample is tested for biomarkers. The NCCN Guidelines emphasize that tissue should be conserved for molecular testing because targeted therapy can be very effective if specific driver mutations are found. Ask your team: "Has my tissue been tested for EGFR mutations and other biomarkers?"

3. Assemble Your Care Team You'll benefit from a multidisciplinary team, which means doctors from different specialties working together:

• Medical oncologist (chemotherapy specialist)
• Thoracic surgeon (if surgery is an option)
• Radiation oncologist (if radiation is needed)
• Pulmonologist (lung specialist)

Key Questions to Ask Your Doctors

According to the NCCN Guidelines for Patients with Non-Small Cell Lung Cancer, here are essential questions:

1. What is my cancer stage, and what does that mean for treatment?
2. What are ALL my treatment options? (surgery, chemotherapy, radiation, targeted therapy, immunotherapy, or combinations)
3. What will happen if I do nothing?
4. Are you recommending anything different from NCCN guidelines? If so, why?
5. How do my age, overall health, and other medical conditions affect my options?
6. Does any option offer a cure or long-term cancer control?
7. How long do I have to decide, and can a social worker help me understand my options?
8. How will we monitor my response to treatment?

Practical Steps This Week

• Request copies of all your test results and pathology reports - You have the right to your [ID removed]
• Write down your questions before appointments
• Bring someone with you to appointments to help take notes
• Ask about smoking cessation support - If you smoke, quitting can improve treatment outcomes
• Ask about supportive care - This includes help managing side effects and improving quality of life, and it's important for everyone, not just at the end of life

What to Expect Next

Your doctors will likely recommend one or more of these approaches depending on your stage:

• Surgery (if the cancer is localized and you're healthy enough)
• Chemotherapy (often platinum-based drugs combined with another agent)
• Radiation therapy (sometimes combined with chemotherapy)
• Targeted therapy (if specific biomarkers are found)
• Immunotherapy (drugs that help your immune system fight cancer)

The NCCN Guidelines note that treatment decisions should be individualized based on your specific situation, including your cancer's characteristics and your overall health.

Resources for More Information

• NCCN Patient Guides: The National Comprehensive Cancer Network offers free, detailed patient guides specifically for NSCLC at NCCN.org/patientguidelines
• American Cancer Society: Provides educational information about lung cancer
• Your hospital's patient navigator or social worker: Can help coordinate care and answer questions

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This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.