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 →

Seizures are common with a brain tumor. What to do when someone has a seizure has the steps in order. Read it before you need it.

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.

Almost everyone has an MRI scan early on, and more of them later. What an MRI is like, and what to ask walks through the day, the noise, the dye, and what to do if small spaces frighten you.

If you have been told where it is, but not yet what it is, where your tumor is, and what that changes puts the place on your scan report into plain words.

If a piece of your tumor is about to be taken, how tissue is taken goes through the needle, the operation, and what happens if the sample does not give an answer.

If a piece of your tumor has been taken and you are waiting to hear what it is, waiting for your pathology results explains what is happening in the lab and why the name can change while you wait. Once the report itself arrives, your pathology report, part by part goes through what each part of it is for, and the words on your gene results takes the short words on it one at a time.

If surgery has been mentioned, brain surgery: what happens, and what comes after walks through the operation, the hospital stay, and the weeks at home that most people are least ready for. It has a long section for whoever is looking after you.

Before any of that there is a set of checks, and two of them are worth knowing about early. Getting ready for surgery covers the appointments, what to ask about the times you are given for stopping food and drink, and why you must not stop a blood thinnerblood thinner: A medicine that makes it harder for your blood to clot. Aspirin is one. And there are several others. Never stop one on your own before an operation. Your team decides that. And each medicine is different. See the glossary on your own.

Your team will also examine you at most visits. You may be sent for a longer day of thinking and memory tests as well. The exam in the room, and the thinking and memory tests covers what each one is and how long each takes.

If radiation has been mentioned, radiation therapy: the mask, the daily visits, and what comes after goes through the planning visit where the mask is made, what a treatment day is like, and the tiredness that does not stop on the last day.

If chemotherapy has been mentioned, chemotherapy: the drugs, your blood counts, and the fever rule takes the drugs one at a time and sets out the one rule worth knowing before you start.

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? (how to think about one)
• 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.