You want to be under the care of top doctors who work with brain tumor patients all the time. ABC2 has a list of centers that specialize in brain tumor treatment across the country in the Find Care section.
“High quality neuro-oncologists, neurosurgeons, other oncologists, and providers can increase success rates to improve quality of life and survival.”
Find the right doctor for you. You want a doctor who primarily works on brain tumors: both neuro-surgeons and neuro-oncologists. Do not hesitate to ask about your doctor’s experience and qualifications. If you’re nervous to ask your doctor this, have your Agent in Charge ask instead. Consider whether the doctor has “too much” experience—you don’t want your doctor to retire mid-way during your treatment or not be up to date with innovative new treatments.
Remember the importance of your doctor’s bedside manner. This is a person who will play a huge role in your life, so it is extremely important that you actually like and trust them. You need to be forthcoming with your doctor so that they can treat you as best as they can, so it is key to have someone you’re comfortable with.
“If you don’t feel that your doctor is spending enough time with you, then he or she is not and you need to go elsewhere. You need to feel that all your questions have been answered and time has been devoted to you.”
Until you are entirely trustful and confident in your team of doctors, continue to pursue additional opinions. This will help you make more informed decisions and weigh your options, because the first recommended course of treatment is not always what is best for you.
Don’t accept “surgery isn’t an option” unless you hear it from at least two highly qualified brain surgeons. Sterotactic guided surgery, awake surgery, laser surgery and radiosurgery are providing new options for even hard to reach tumors.
Members of your treatment team will likely include a diagnosing physician, radiologist [glossary], neuro-surgeon, neuro-oncologist [glossary], neurologist [glossary], anesthesiologist [glossary], pathologist [glossary], and nurse. You may also work with the hospital social workers, counselors or psychiatrists, physical or occupational therapists, and others depending on your specific course of treatment. Make sure your care doctor is covered by your health insurance plan, or that you can afford out-of-pocket costs. Ask your doctor if they allow you to record sessions. This can help to ensure you don’t miss or forget anything your doctor tells you.
For children, it is especially important to find a neuro-oncologist who specializes in pediatrics. This is because pediatric tumors and young patients are quite different from adults with brain tumors.
All-Star Medical Center
“Get yourself to the best place in the country that you can afford, find a doctor with whom you are comfortable.”
Don’t feel obligated to continue treatment at the first place you are treated. You want to be cared for at a medical center with specialized brain tumor expertise, not a community hospital. These centers will house the most experienced doctors, have the best technology, and have access to the most clinical trials. ABC2 has developed a list of high-quality brain tumor centers. For children, it is best to be treated at a children’s hospital where there are pediatric specialists and a kid-friendly atmosphere.
You want a center that is in-the-know about clinical trials and cutting edge medicine. Treatments against other cancers may be useful against your brain tumor in “off-label” type of use, but you need specialized knowledge to access this. The standard of care is not always enough to fight an aggressive brain tumor.
Traveling to a great center can be worth it for many patients. If you don’t have a renowned cancer center with a brain cancer-focused team near where you live, you should seriously consider travel for surgery and treatment. Traveling can be tiring and have its own negative side effects, so consider the drawbacks and benefits before making a decision. Most brain tumor patients don’t have too much trouble flying or riding in the car during treatment. Again, check that your health insurance will cover your treatment center, or decide if it’s something you can handle out-of-pocket.
If you don’t like how you are being treated, speak up for yourself. You can always switch doctors and hospitals if you do not think you are getting the best treatment possible.
10 Steps: Living with Brain Cancer
- 1. Take a Deep Breath
- 2. Decide What's Important to You
- 3. Organize Your Support Team
- 4. Educate Yourself
- 5. Gather an All-Star Treatment Team
- 6. Create a Treatment Plan with Your Doctor
- 7. Consider Joining a Clinical Trial
- 8. Own Your Health Records
- 9. Own Your Tumor Tissue
- 10. Test Your Tumor's Genetic Makeup
 Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.