Were you or was your loved one recently diagnosed with a brain tumor?

Whether you are a patient or caregiver, one of the first things you may choose to do is gather information and find out how to get support. Yet this can seem overwhelming. Many people say, “I don't even know where to start!” This section is designed to help guide you through gathering information one step at a time. It covers the following topics:

• Questions To Ask
• Publications to Read
• NBTS Treatment Center Database
• Ask a Health Professional
• Find Support

You may also call our Patient Information Line at 800.934.2873 and speak with our trained staff by phone. 

Questions to Ask

 
The following ten questions provide a starting point for what you may want to ask your healthcare professional. Be sure to have a notebook ready to write down the answers.

1. What is the name and grade of my tumor? Is it a primary or metastatic tumor?
    
2. Is my tumor benign or malignant?
    
3. What are my treatment options?
    
4. What are the possible side effects of each treatment option?
    
5. Which treatment would you choose if you had my tumor?
    
6. If I am more interested in quality of life rather than how long I live, which treatment would you recommend?
    
7. Are there any clinical trials for which I am eligible and, if so, what questions are those clinical trials asking?
    
8. If I wanted a second opinion from another neuro-oncologist or neurosurgeon, who would you recommend?
    
9. What factors do you take into consideration to predict how I am going to do?
    
10. How can I reach you or someone else in your office if I have questions after today?

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Publications to Read

 
As you begin to gather information, it may be helpful to review NBTS’s publications, which you can find here. The following are some especially helpful publications:

• The Essential Guide to Brain Tumors
• Coping with Your Loved One’s Brain Tumor

 
NBTS Treatment Center Database

 
It is common to wonder where to go for treatment. NBTS Treatment Center Database is designed to help you find a brain tumor treatment center that provides the services you may be seeking. You can search by your zip code or state, or by a treatment center name. Click here to access the Treatment Center Database.

If you are unsure of what things you should look for in a treatment center, you may want to read the fact sheet entitled Issues to Consider When Choosing a Brain Tumor Treatment Center.

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Ask A Health Professional

 
Often you may have additional questions after a doctor's appointment or you may think of questions as you begin to learn more about brain tumors. NBTS has a Medical Information Specialist, Mary Lovely, RN, Ph.D., who can answer questions about brain tumors and symptom management. You can reach Mary at NBTS offices by calling 1.800.934.2873. You can also email Mary by clicking here.

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Find Support

 
As you learn more about brain tumors, you may also find it helpful to connect with other patients, survivors, and caregivers. The Find Support section of NBTS's website can connect you through online Message Boards, a Support Network, and a list of Support Groups across the country. Everybody is different in how they reach out for support, but it is helpful to know that you are not alone, whether you are a patient, survivor, or caregiver.

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