Just diagnosed with Lymphoma — what should I do first

First Steps After a Lymphoma Diagnosis

I'm glad you're taking action to understand your situation. Here's what you should prioritize right now:

1. Understand Your Specific Type of Lymphoma

Lymphoma isn't one disease—it's actually a group of different cancers that develop from lymphocytes (white blood cells). According to the NCCN Guidelines, the specific type you have matters enormously because it affects:

• How aggressive your cancer is
• What tests you'll need
• Your treatment options
• Your outlook

Ask your doctor: "What specific type of lymphoma do I have?" (Examples include Diffuse Large B-Cell Lymphoma, Follicular Lymphoma, Marginal Zone Lymphoma, etc.)

2. Get Complete Diagnostic Testing

Your care team will likely order several tests to understand your lymphoma fully:

Imaging tests (according to NCCN Guidelines):

• CT scans - take detailed pictures of your chest, abdomen, and pelvis to see where cancer is located
• PET scans - use a radioactive tracer to show which areas have active cancer cells (cancer cells appear as bright spots)
• These help determine your cancer's stage (how far it has spread)

Tissue/blood tests:

• Biopsy - a sample of affected tissue examined under a microscope to confirm the diagnosis
• Biomarker and mutation testing - according to NCCN Guidelines, these tests look for specific genetic changes in your cancer cells. Some mutations can be targeted with specific therapies, while others may affect treatment decisions

Bone marrow tests - may be done depending on your situation to see if cancer has spread to your bone marrow

3. Ask About Your Biomarkers and Mutations

This is important. According to NCCN Guidelines for Marginal Zone Lymphomas, mutation testing looks for specific changes in your cancer cells—things like deletions (missing pieces), amplifications (duplicated pieces), or other genetic changes. Some of these changes can be targeted with specific drugs.

Ask your doctor: "What mutations or biomarkers were found in my cancer cells, and what do they mean for my treatment options?"

4. Gather Your Medical Team

You'll want:

• An oncologist (cancer specialist) - ideally one who specializes in lymphoma
• Possibly a hematologist (blood specialist)
• Your primary care doctor to coordinate overall care
• Consider asking about a second opinion - this is completely normal and often recommended for cancer diagnoses

5. Prepare for Your Next Appointment

Write down questions like:

• What stage is my lymphoma, and what does that mean?
• What are my treatment options?
• What are the goals of treatment (cure, remission, symptom control)?
• What are the side effects I should expect?
• How often will I need appointments and scans?
• Are there clinical trials I might be eligible for?

6. Gather Your Records

Request copies of:

• All pathology reports (tissue analysis)
• Imaging reports and images
• Lab results
• Genetic/mutation testing results

Having these helps with second opinions and ensures continuity of care.

7. Connect with Support Resources

According to NCCN Guidelines, helpful organizations include:

• Lymphoma Research Foundation (lymphoma.org) - patient education and support
• National Cancer Institute (NCI) - reliable medical information
• Clinical trials database (clinicaltrials.gov) - to explore research studies

What NOT to Do Right Now

• Don't delay getting complete testing and staging
• Don't make treatment decisions without understanding your specific diagnosis
• Don't assume all lymphomas are treated the same way

Key Takeaway

Your first priority is getting a complete picture of your specific lymphoma type, stage, and genetic characteristics. This information drives all treatment decisions. Take time to understand your diagnosis, ask questions, and build your care team—but don't delay getting started.

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