Recently Diagnosed Patients
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 know you should do is gather information and find out how to get support. Yet, this can seem overwhelming and many people say, "I don't even know where to start!" This section is designed to help guide you through the steps to take to gather information one step at a time. It covers the following topics:
NBTF Treatment Center Database
Find Support
You may also call our Patient Information Line and speak with our trained staff by phone: 1.800.934.2873
Questions to Ask
These are ten questions you can ask of your health professional. Be sure to have a notebook ready to write down the answers. These will give you a good starting point if you are unsure of what questions to ask.
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What is the name and grade of the tumor? Is it a primary or metastatic tumor?
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Is the tumor benign or malignant?
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What are the treatment options?
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What are the possible side effects of each treatment option?
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Which treatment would you take if you had this tumor?
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If I am more interested in quality of life rather than how long I live, which treatment would you recommend?
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Are there any clinical trials for which I am eligible, and what questions are those clinical trials asking?
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If I wanted a second opinion from another neuro-oncologist or neurosurgeons, whom would you recommend?
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What factors do you look at to predict how I am going to do?
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How can I reach you or someone else in your office if I have questions after today?
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Publications to Read
You may also want to begin with NBTF publications. You can find a list of publications here. Some particular publications worth spending some time with are:
The Essential Guide to Brain Tumors
Brain Tumors: Understanding Your Care
2007 Resource Directory
NBTF Treatment Center Database
It is common to think "I've just been diagnosed. Where do I go for treatment?" The NBTF Treatment Center Database is designed to help you find a brain tumor treatment center that provides all of the comprehensive services you may need. You can search by your zip code, state, or treatment center name. Click here to see the Treatment Center Database.
If you are unsure of what things you should look for in a treatment center, you may want to read NBTF's fact sheet Issues to Consider When Choosing a Treatment Center.
Ask A Health Professional
Often times, you may have additional questions after a doctor's appointment, or think of questions as you begin to learn about brain tumors. NBTF has a Medical Information Specialist, Mary Lovely, RN, PhD, who can answer questions about brain tumors and symptom management. You can reach Mary at the NBTF offices by calling 1.800.934.2873. You can also e-mail Mary through the NBTF website here.
Find Support
As you learn more about brain tumors, it can also help to connect with others who have been through this. The Find Support section of the NBTF website can connect you with other patients and caregivers through online message boards, a Support Network and a listing 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 or caregiver.
