Just diagnosed? Start here

Below you'll find where to get help, what to look for, and what tends to help in the first week. This can feel like a lot, so we'll take it one step at a time.

Get emergency help right away if you notice any of these signs

Call 911 or go to the emergency room right now if you or the person you care for has any of these:

• A seizure for the first time, or one that will not stop
• Sudden weakness, numbness, or trouble speaking
• A sudden severe headache, or a headache that keeps getting worse
• Throwing up over and over
• Confusion, or trouble staying awake

These need care today, not an appointment next week.

Find the nearest emergency room →

If none of those are happening, take a breath

Most people who are newly diagnosed have days or weeks to plan. You do not have to figure it all out today. Your doctors and care team will help you understand each option, and can go over it as many times as you need.

What helps in the first week

• Write down your exact diagnosis. Ask your team to spell it. The words on your pathology report shape which treatments and trials fit you.
• Bring someone to appointments. You'll hear a lot of information, and two people take in different parts of it. It's fine to record the visit if you ask first.
• Write your questions before you go. You will forget them in the room. Everyone does.
• Find out who to contact with questions. Most teams have a nurse navigator. That person is your fastest answer to most questions.

Questions to ask your team

• What type and grade is my tumor?
• Was any gene testing done, and what did it show?
• What are my treatment choices, and what happens if I wait?
• Is there a clinical trial that fits me?
• Who do I call when something changes?

Where to talk to a person

The American Brain Tumor Association CareLine is free. Call 800-886-2282, or reach them through their CareLine page. It is open on weekdays during business hours.

If you need to talk to someone right now, day or night, see get help now.

About this page

This is the first, short draft of this page. A fuller step-by-step guide is coming. Until then, the National Cancer Institute and the American Brain Tumor Association have the most trustworthy plain-language basics we know of.

What to do next

Write down your exact diagnosis and all of your questions for your next visit.

Call the CareLine before your next appointment if you want to talk it through with someone who knows brain tumors.