Just diagnosed with Head and Neck Cancer — what should I do first

First Steps After a Head and Neck Cancer Diagnosis

I'm sorry you're facing this diagnosis. Here's what you should prioritize right now:

1. Assemble Your Care Team

According to the NCCN Guidelines for Head and Neck Cancers, a multidisciplinary consultation is recommended for all patients. This means you need:

• Head and Neck Cancer Specialist (surgical oncologist or medical oncologist)
• Radiation Oncologist (if radiation is part of your treatment)
• Medical Oncologist (for chemotherapy or immunotherapy decisions)
• Supportive Care Specialists: speech-language pathologist, nutritionist, dentist, and audiologist

Why this matters: Head and neck cancer treatment often involves multiple approaches working together, and coordinating these specialists early leads to better outcomes.

2. Get Complete Diagnostic Testing

Your care team should order:

• Imaging: CT and/or MRI of your primary tumor and neck
• Biopsy: Tissue sample to confirm diagnosis and test for important biomarkers
• HPV and p16 testing: If you have oropharyngeal cancer, this testing is required and changes treatment planning
• PD-L1 testing (CPS score): This helps determine if immunotherapy might work for you
• Chest imaging: To check if cancer has spread
• Baseline assessments: Dental evaluation, swallowing evaluation, hearing test, and nutritional assessment

Why this matters: These tests determine your cancer stage and guide which treatments will work best for YOUR specific cancer.

3. Understand Your Cancer Type and Stage

Head and neck cancer includes several different types (larynx, oropharynx, nasopharynx, hypopharynx, sinuses, etc.), and each has different treatment approaches. Ask your doctor:

• What is the exact location of my cancer?
• What is my TNM stage? (This describes tumor size, lymph node involvement, and spread)
• What are the key biomarkers in my tumor? (HPV status, p16, PD-L1 score)

4. Address Lifestyle Factors NOW

According to NCCN Guidelines, if you smoke or use tobacco:

• Stop immediately. Continuing to smoke significantly worsens treatment outcomes and increases side effects
• Ask your doctor for smoking cessation resources and support

If you drink alcohol:

• Discuss safe limits with your care team during treatment

5. Prepare for Treatment Side Effects

Head and neck cancer treatment can affect:

• Swallowing and eating (dysphagia)
• Speech and voice quality
• Dry mouth (xerostomia)
• Taste changes
• Mouth sores (mucositis)
• Fatigue

What to do now:

• Meet with a speech-language pathologist for baseline swallowing assessment
• Meet with a nutritionist to plan nutrition support during treatment
• Discuss pain management options with your team

6. Screen for Mental Health Support

The NCCN Guidelines recommend screening for depression at diagnosis. Cancer diagnosis is emotionally overwhelming—this is normal. Ask about:

• Counseling or therapy services
• Support groups for head and neck cancer patients
• Distress management resources

7. Fertility and Reproductive Planning (if applicable)

If you're of childbearing age, discuss:

• Egg or sperm banking before treatment (some treatments affect fertility)
• Contraception needs during treatment
• Future pregnancy planning

8. **Get Your [ID removed]

Request copies of:

• Pathology report (tissue diagnosis)
• Imaging reports (CT/MRI)
• All test results
• Biopsy slides if possible

Having your own copies helps with second opinions and coordinating care.

9. Consider a Second Opinion

It's completely reasonable and encouraged to get a second opinion from another head and neck cancer specialist, especially before starting treatment. This is standard practice.

10. Ask These Key Questions at Your First Appointment

• What is my exact diagnosis and stage?
• What are my treatment options?
• What is the goal of treatment (cure vs. symptom control)?
• What are the side effects I should expect?
• How will we monitor my response to treatment?
• What support services are available?
• Are there clinical trials I might be eligible for?

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Important Timeline

While it's natural to feel urgent, you typically have 1-2 weeks to gather information and plan treatment. Don't rush into decisions without understanding your options, but also don't delay starting treatment once your plan is set.

Resources

• NCCN Guidelines for Head and Neck Cancers provide evidence-based treatment recommendations
• American Cancer Society (cancer.org) has patient education materials
• National Cancer Institute (cancer.gov) offers detailed information about your specific cancer type

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