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Diagnosis

Youíve just received scary news about yourself or someone you love: the diagnosis is a brain tumor. You may have heard the words before, or heard of someone who had a brain tumor, but now it's you, itís your family. It feels like a nightmare, but it's real. You need to make lots of decisions and talk to lots of doctors; so many questions are running through your mind. No one will guide you through this journey, you must help yourself or the person you love who has been diagnosed with a brain tumor.

The first thing you must do is educate yourself about brain tumors so you can help yourself and your loved ones. Every brain tumor case is unique. You need to be your own advocate for yourself and your family. 

Your Brain Tumor Education: Some really great websites exist that can help you educate yourself about brain tumors, which we've listed on the Links page

bulletThe Brain Tumor Foundation: This site was started by a neurosurgeon, Dr. Patrick Kelly (who was Mike's neurosurgeon). It contains great information and a brain tumor survival guide.
 
bulletLiving with a Malignant Brain Tumor-A Patient's Survival Guide by the late Steve DePesa. Written in 1998, three years after his diagnosis of a glioblastoma mulitforme. His amazingly comprehensive and easy-to-understand "Guide" covers all aspects of the brain tumor journey - from a patient's perspective - and contains honest and practical information such as "questions to ask after surgery" and obtaining your medical records. Steve's site is rated "most popular" of all the links on VirtualTrials.com (another must-visit site).
 
bulletNow You Have a Diagnosis: Whatís Next?  This link takes you to a website that will help you to use research and other information to make the best treatment decisions for you (from the Agency for Healthcare Research and Quality). 

What To Do Now? 

bullet Talk to your doctor
bulletWho is your doctor?
bulletGet to know your insurance company
bulletTalk with your employers
bulletFind a support group
bulletItís a good time to have ďThe TalkĒ
bulletRealize that statistics are just numbers!
bulletTreatment Tools

The following is a checklist of ways to start helping yourself at diagnosis:

  1. Talk to your doctor and write down as much as he or she says about the diagnosis as possible. Keep a notebook with you and try to stay organized. Youíve just received frightening news, and you might forget what is said to you at this time. Itís ok to call the doctor or even have the doctor paged if you need clarification on what he or she has just told you about the diagnosis. There are no stupid questions here Ė if you have a question, ask it, itís your right! If you have a doctor who wonít answer your questions, then find a new doctor. Your life or the life of someone you love is at stake, so ask all the questions you want!
      
  2. Who is your doctor? Ask your doctor how many brain tumor patients he or she treats a year. You need a doctor who specializes in treating brain tumors. You need a surgeon who has lots of experience with brain tumors. You need a neuro-oncologist and a neurosurgeon in a large city at a teaching hospital who will have access to the latest treatment ideas and research. 
      
  3. Get to know your insurance company, and donít take no for an answer. Insurance companies are in the business of making money. The insurance company does not care about your diagnosis, they only care about saving money and will go to great lengths to do so. Your insurance company might deny your claim or they might tell you that you cannot use a doctor who is out of your health plan. Do not accept this! This is your life and you need to fight and receive the best medical care possible. This is a battle that you must win. You can appeal the insurance companyís decisions, you can re-submit claims, you can have claims reviewed. Contact your State's Department of Insurance to find out more information. Do not let the insurance company tell you how to treat your brain tumor diagnosis!
      
  4. Talk with your employers. You or someone you love has a serious medical problem that no one you know will really understand unless it happens to him or her. Be upfront with your employer Ė you will need time off. Take Family Medical Leave. Chances are no one at your job is going to take you by the hand and explain this to you Ė the U.S. government has provided the Family Medical Leave Act to help you in this situation.  Your employer is required to give you time off to care for your own serious medical condition or for a seriously ill family member. Ask for a Family Medical Leave packet that the doctor must fill out from your Human Resources department. You cannot lose your job because you or your loved one is sick. Itís against the law.
      
  5. Find a support group. You need to connect with other people who are going through the same ordeal. There are many on-line support groups, such as the BrainTmr e-mail list where you can share information on treatments  and find emotional support. Check with your hospital for outreach centers and support groups. Check with your church or religious organization. These are invaluable and free resources for support and information.
     
  6. Itís a good time to have ďthe talkĒ. This is a good reason to talk to your spouse or loved one about your wishes for medical care. Who will make the decisions for you if you are too ill to make them yourself (a health care surrogate)? Do you have a will? Do you have a living will? Do you have a guardian designated for your minor children? How do you feel about artificial life support? Burial or cremation? Religion? Check out the Caring Connections website's article "Talking with Others about Their End-of-Life Wishes." This website also provides state-specific medical directives. We also recommend the American Bar Association's article "Tools for Health Care Advance Planning." Even if you are not the sick person, talk to your loved ones about your own wishes and what-ifs.
     
  7. Realize that statistics are just numbers! You will read and hear a lot of scary statistics about brain tumor survival, donít let them discourage you. Donít ever give up hope!

 

Treatment Tools

bulletClinical Trials
bulletSurgery
bulletRadiation 
bulletChemotherapy
bulletComplementary Therapies

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Updated: 29 Sep 2006

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