Finding out that you have a brain tumor instantly changes your life. It’s common to feel many emotions at the same time as you begin to make sense of the news and think about what it might mean for you and those you love.
We’ve put together a few first steps to help you navigate your brain tumor journey.
For a detailed guide on what to do after a brain tumor diagnosis, download our free patient handbook:
STEP 1: Educate Yourself
Understanding your diagnosis and your options is a key first step.
To get you started, we’ve put together a list of questions for your health care team.
In addition to talking with your doctors, you may want to do additional research. The ABTA is here to help provide you with information and resources during the different steps of your brain tumor journey. On our website, you can learn more about:
- Your specific tumor diagnosis, including tumor type and grade
- Medical centers that specialize in brain tumor care
- How to address brain tumor symptoms
- Treatment options for brain tumors
- Information about clinical trials
A note about terms: benign vs non-malignant
You may have heard the term “benign brain tumor.” But what does that mean?
“Benign” brain tumors are not cancer, although they can often cause symptoms and may need treatment. In fact, although many people are familiar with the term “benign,” it’s actually not an accurate description, because even a so-called “benign” brain tumor can still be a serious medical condition. For that reason, we prefer to use the term “non-malignant” to describe brain tumors made up of noncancerous cells.
For more information, visit Brain Tumor FAQs
STEP 2: Get a Second Opinion
If you have been diagnosed with a brain tumor, the ABTA strongly encourages you to visit a brain tumor specialist at a brain tumor center if you have not done so already. After that, we still recommend seeking a second opinion from another brain tumor specialist before starting treatment. A second opinion can validate your diagnosis or offer a different perspective. It may also open the door to additional treatment options.
Here are the first few things you need to do to get a second opinion:
- Gather all of your medical records, including scans, lab test results, pathology slides, and any other testing you’ve had.
- Call your health insurance company to verify coverage for a second opinion and inquire about costs. Some insurance plans require a second opinion, while others may cover a second opinion if the patient or doctor asks for it.
Ask your doctor – or another reliable source – for a referral to a brain tumor specialist. Most doctors welcome a colleague’s opinion and can recommend someone. If you need help finding a brain tumor specialist for a second opinion, visit the ABTA’s listing of well-regarded brain tumor treatment centers.
It’s possible that the suggested treatment plan from each doctor will be different. To weigh your options, ask yourself about the potential benefits of each. Talk over your concerns with your doctors. In some cases, a third opinion is a good idea.
STEP 3: Verify Insurance Benefits
If you have insurance:
Working with your insurance company is a necessary and sometimes challenging part of the brain tumor journey. Your policy’s details can often be complex and confusing.
Here are some tips to help you through your first contact with your insurance company:
- Review your policy before the call, including deductibles, any pre-authorizations needed, the medications your plan covers, and coverage limits.
- As you review, make a note of any questions or concerns that you have about your coverage.
- Write down the date and time of each call, and record the name of the person you speak with and what you discussed.
- Get the reference number (sometimes called a case number or file number) assigned to your claim, so you can refer to it in future calls
If you don’t have insurance:
Contact the hospital’s social worker or patient navigator, who will have information about insurance options, federal assistance programs, local and national funding organizations, and other ways to help you find healthcare coverage.
STEP 4: Get to know your healthcare team
Your healthcare team will consist of doctors, nurses, and other specialists. Here are some of the medical professionals you may encounter:
Your Healthcare Team
- Neurosurgeon: A surgeon who treats many disorders of the nervous system.
- Neuro-oncologist: A doctor who specializes in cancer of the brain and the rest of the nervous system and is typically the primary coordinator of your care team.
- Primary care physician: Your local doctor who sees you for common health problems. Although this physician does not specialize in brain tumor care, the primary care physician can be a great help in finding specialists and helping to coordinate overall care.
- Hospitalists: Physicians working within the hospital. Their care focuses on the hospital stay, and the medical care needed during that stay.
- Social worker: A professional typically assigned by the hospital and/or clinic to help assess and assist with both patient and caregiver needs, from navigating insurance to obtaining services.
- Nurse practitioners: Providers who oversee the management of patient care as recommended by a physician.
- Nurse navigators: These professionals can help you identify educational and support resources at all stages of an illness and can help coordinate appointments and prescriptions. They may be a primary point of contact within the healthcare system.
In addition to the main patient care team, you may also see additional specialists depending on your specific diagnosis, symptoms, and needs. They may include:
- Endocrinologist: A physician who specializes in the system of organs that secrete and respond to hormones. An endocrinologist may be consulted if one or more of the endocrine organs, such as the pituitary gland which is located in the brain, becomes affected.
- Neuropathologist: A physician who analyzes the tumor tissue removed during surgery and prepares a pathology report that identifies the location and type of the tumor.
- Neuropsychologist: A psychologist who specializes in understanding how cognitive, emotional, and psychological functioning work in the brain. If the patient is experiencing psychological side effects from the brain tumor or its treatment, a neuropsychologist can help assess brain damage to these areas and construct strategies to improve functioning.
- Psychiatrist: A physician who diagnoses and treats mental health issues such as depression or other mood disturbances that may result from a brain tumor or its treatment.
- Neuroradiologist: A physician who oversees radiation therapy.
- Rehabilitative specialists: The rehabilitative team can include occupational therapists, physical therapists, and speech therapists, who work to help improve strength, mobility, or communication.
STEP 5: Get Support
It’s easy to underestimate the emotional impact of a brain tumor diagnosis, but you’re not alone on your journey. Here are some ways for you to create a brain tumor support system.
Our caring team is available to connect you with educational and support resources. Contact the ABTA.
Your Healthcare Team
Doctors, nurses, and other members of your healthcare team can answer your questions and give you advice about specific issues you’re facing.
Social workers, counselors, or members of your faith community can be a great source of support and resources as well.
Friends and Family
Friends and family can help with many aspects of your care. From attending appointments with you to helping out around the home, your loved ones want to help. Don’t be afraid to ask.
Brain Tumor Support Groups
Support groups, either in person or online, can be great outlets to share your feelings, ask questions, and learn from the experiences of others. Find a support group near you.
Connections Brain Tumor Support Community
ABTA Connections™ is an online community that connects patients, families, friends, and caregivers for support and inspiration. Members join for free and have access to the site 24/7. Visit Connections.
There are lots of additional resources on the ABTA’s website, including a library of on-demand webinars for patients and caregivers.