When you—or a loved one—receives a brain tumor diagnosis, the next steps can feel overwhelming. This checklist offers clear guidance through the early stages, inspired by the Brain Cancer Support & Solutions Alliance’s “Newly Diagnosed Checklist“.

1. Find the Most Specialized Care You Can

Whenever possible, seek treatment at a large, specialized brain tumor center—even if it means traveling. While smaller, local hospitals may provide surgery and treatment, major centers typically offer:

• Surgeons with deep expertise in brain tumor removal

• Access to the latest diagnostic tools and surgical techniques

• More clinical trial options

• Advanced pathology for more accurate diagnoses

• Better tumor tissue storage for future testing

Look for neurosurgeons who focus specifically on brain tumor resection. Their experience can make a significant difference in outcomes.

2. Discuss the Standard of Care

This is an important conversation to have with your care team!

3. Explore Clinical Trials Early

Some trials require enrollment before your first surgery—such as those involving 5-ALA fluorescence-guided resection or custom vaccine development.

If your tumor is deemed “inoperable,” get a second opinion. You may also want to explore:

• Laser Interstitial Thermal Therapy (NeuroBlate) – available at many centers nationwide

• MRI-guided focused ultrasound – an experimental option at select facilities

• Stereotactic radiosurgery (Gamma Knife, CyberKnife) – non-invasive precision radiation

4. Request Tumor Genetic Testing

Comprehensive tumor profiling can guide treatment decisions and open doors to clinical trials. Tests often include:

• MGMT status

• IDH1 mutation

• EGFR mutation/amplification (including EGFRvIII, important for certain immunotherapy trials)

• 1p/19q codeletion

Two well-known testing providers are Caris Life Sciences and Foundation Medicine. Costs can be high, but many insurance plans cover them. Ask your surgeon about testing before surgery.

5. Decide How Tumor Tissue Will Be Preserved

Most hospitals use FFPE (formalin-fixed paraffin-embedded) preservation, but flash-freezing in liquid nitrogen keeps the tissue more intact, making it useful for future personalized cancer vaccines.

Companies like Store My Tumor provide this service, but arrangements must be made with your surgeon before surgery.

6. Educate Yourself

Understanding your diagnosis and the options available to you is an important step in taking control of your care. Learning about the brain tumor journey can help you feel more prepared, confident, and empowered when making decisions with your medical team. Take time to research reliable, trusted sources and read through materials that explain treatments, side effects, and the overall process. The more you understand, the better equipped you’ll be to ask informed questions, evaluate options, and actively participate in your care plan.

7. Join a Support Group

You don’t have to go through this alone. Support groups offer practical advice, shared experiences, and emotional encouragement.

Some popular Facebook groups:

• Optune™ Support For GBM

• Glioblastoma – GBM Survivors to Thrivers!

• A Survival Guide to GBM

8. Keep Records and Stay Organized

• Request all medical records and test results

• Store them in a binder or secure digital folder

• Consider recording appointments (with permission)

• Bring a trusted friend or family member to help remember details

9. Build Your Support Team

Ask trusted friends or family members to help with:

• Researching treatment options

• Coordinating communication with your wider support network

• Attending appointments with you

10. Plan for Insurance and Finances

• Choose the best coverage you can afford

• Medicare patients should consider strong supplemental plans rather than Medicare Advantage (which may limit provider choice)

• The Musella Foundation offers co-pay assistance for treatments like Optune™, Avastin™, Gliadel™, and Temodar™

• For the uninsured, they provide a Drug Discount Card

• Websites like GoodRx.com can help find coupons for prescription and non-prescription medications

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Link to an In-Depth Guide