STEP 1: Educate Yourself

A good understanding of both your diagnosis and your treatment options is a key first step.

Your health care team is a vital source of information and knowledge. To help guide your conversations, we’ve put together a list of questions about primary and metastatic brain tumors for you to ask 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 find:

• Information on 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
• Live and on-demand educational webinars on topics related to the brain tumor experience
• Social and emotional support resources

A note about terms: benign vs malignant

You may have heard the terms “benign,” “non-malignant,” or “malignant” in reference to brain tumors, but what do they mean?

Benign tumors (also known as non-malignant or non-cancerous brain tumors) start from the cells within or surrounding the brain and typically grow slowly. Even though they are not cancerous, they are still serious and can cause significant symptoms. The most common types of benign brain tumors are meningiomas, acoustic neuromas, and pituitary tumors.

Malignant tumors start from cells within or surrounding the brain, as well as cells that spread from the body (aka metastasize) and typically grow rapidly. They are cancerous, which means they not only grow locally, but also can invade distant parts of the brain and nervous system. The most common type of malignant brain tumors are gliomas, which originate from brain glial cells, and metastatic brain tumors, which originate from cancer cells in other parts of the body, such as breast, lung, or skin.

STEP 2: Get a Second Opinion

After being diagnosed with a brain tumor, choosing a treatment plan can seem overwhelming. One way to ensure that you are making an informed decision is to seek a second opinion from another doctor or multidisciplinary team of specialists. After receiving a diagnosis, the ABTA strongly encourages you to consider consulting with a brain tumor specialist at a brain tumor center and seek a second (or third) opinion before starting treatment. A second opinion can help confirm, and provide more information about your diagnosis. It can also provide additional perspectives, resources, and especially treatment options.

One way you can get a second opinion is to call your health insurance company to verify coverage and inquire about costs. Most insurances cover second opinions and do not require a referral, but it can be helpful to check with your insurance provider first. If a referral is required, you can ask one of the doctors currently caring for you. Most doctors welcome a colleague’s opinion. Your doctor can not only recommend someone, but also assist your efforts to have the best experience getting connected. 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.

A second way to get a second opinion is through an online portal offered by a brain tumor center. You can search online for a center in your area and go to their website. Often they will have a link to request an online second opinion. Most centers will charge varying fees for this service and health insurance usually doesn’t cover it. You will need to inquire through the center or look in the FAQ’s to see how much it will cost. Letting your current doctor know you are seeking a second opinion tends to substantially help both doctors and help you have the best experience.

A third way to get a second opinion is to have your case reviewed at a multidisciplinary tumor conference (also known as a brain tumor board). This is a forum where your images, pathology, and medical information are reviewed confidentially by medical specialists in order to assist in making treatment recommendations and/or evaluating you for a clinical trial. Your case is presented by your doctor and the results are shared with him/her, who then shares the information with you. Ask your doctor if brain tumor conferences/boards are available to you. If your current health care institution does not have a board, your can find one using ABTA’s Treatment Center Guide.

After you receive your second opinion(s):

• Make an appointment with your first doctor to talk about the second opinion.
• Ask both doctors to explain how each interpreted your results and arrived at their recommended treatment plan.
• Ask what research studies or professional guidelines they consulted.
• Ask what they have recommended for other patients in your same situation.
• Ask if the two doctors can review your case together, or for a brain tumor board to review your case
• Consider seeking a third opinion.

You are your strongest advocate. Ask yourself about the potential benefits of each option and choose what is best for you based on doctors’ recommendations.

Primary Brain Tumors – Questions to Ask Your Doctor

Metastatic Brain Tumors – Questions to Ask Your Doctor

STEP 3: Search for Clinical Trials

Clinical trials help to discover new ways to prevent, detect and treat brain tumors. In general, there are several different types of clinical trials, including treatment trials, supportive care trials (also called quality-of-life trials), prevention trials, early detection or screening trials, and diagnostic trials. Most clinical trials focus on new treatment types or approaches and evaluate whether the treatment (often a drug or device) is safe and effective. Clinical trials are available throughout the entire brain tumor journey, from new diagnosis through survivorship.

Although researchers truly do not know whether the new treatment or the current treatment is the “best,” the new treatment being investigated must demonstrate some potential for success before a clinical trial is allowed to begin. That potential is based on previous laboratory experience, animal trials, or the results of other clinical trials. The results of clinical trials are measured against the best standard therapy available for the particular condition.

Everyone enrolled in a clinical trial must meet the same eligibility criteria, receive the same treatment process and be evaluated the same way. This means that patients involved in the same clinical trial will most likely have the same type of tumor, along with many other similarities, in order to ensure that the results are valid and not due to some other factor.

Clinical trials play an important role in whether new treatments become available for public use. Many of the treatments available today are the result of clinical trials.

Ask your doctor if clinical trials are an option for you. Find more information about clinical trials on the ABTA website or read ABTA’s educational brochure “Clinical Trials”.

STEP 4: Verify Insurance Benefits

If you have health insurance:

Working with your health 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 spoke 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 5: 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/Neurosurgical oncologist: A surgeon who specializes in surgery of the central nervous system.
• Neuro-oncologist: A doctor who specializes in treating patients with cancers or tumors of the central nervous system tumors.
• Medical oncologist: A doctor who specializes in treating patients with cancers or tumors of the body.
• Primary care physician (PCP):The patient’s local doctor. Although the PCP does not specialize in brain tumor care, he or she can be a resource for finding specialists and helping to coordinate overall care.
• Neuro-oncology nurse: A registered nurse who specializes in supporting and educating brain tumor patients.
• Medical assistant: Provides basic clinical services to patients, often in outpatient settings.
• Nurse Practitioner or Physician’s Assistant: Health care professionals with advanced degrees who can either be your primary provider or may work alongside a doctor to develop your treatment plan.
• Social worker: Provides valuable resources that can include assistance in making medical decisions, coordinating at-home care, locating financial resources, and more. Social workers can help patients and their loved ones cope with a new diagnosis.
• Nurse navigator: Assists with appointment management, disease education, information on symptoms and side effects, finding resources, and more. These nurses often specialize in the specific diagnosis for which they are providing navigation services.

Related Specialists

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:

• Neuropathologist: Analyzes brain tumor tissue removed during surgery and prepares a pathology report, which typically directs the type of treatment the patient receives.
• Neuropsychologist: Helps assess and provide strategies for patients who are experiencing cognitive, behavioral, and emotional side effects from the brain tumor or treatment.
• Psychiatrist: A doctor who diagnoses and treats mood and emotional issues that may arise from the brain tumor or treatment.
• Neuroradiologist: A radiologist with training in reading images of the brain and central nervous system.
• Radiation oncologist: A doctor who specializes in using radiation to treat cancers.
• Neurologist: A physician who specializes in treating patients with neurologic symptoms and disorders.
• Rehabilitative specialists: Health care professionals such as occupational, physical, and speech therapists who can help improve a patient’s strength, mobility, memory, or communication.
• Endocrinologist: May be consulted if the brain tumor or treatment affects one of the patient’s endocrine organs, such as the pituitary gland.
• Child life specialist: Works to reduce anxiety and distress for children during their hospital experience.
• Dietitian/Nutritionist: A nutritionist on your medical team can work with you to identify healthy eating habits and supplements that can help you cope with symptoms and side effects you are experiencing.
• Clinical Research Nurse/Coordinator: A professional who specializes in research who will guide you through the steps of the clinical trial.

STEP 6: 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.

ABTA CareLine

Our caring team is available to connect you with educational and support resources. Contact the ABTA online or call  800-886-ABTA (2282).

Online Support

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.

One-on-one Peer Support

The ABTA’s Patient and Caregiver Mentor Support Program offers patients and caregivers the opportunity to connect with volunteer mentors who have been through similar experiences firsthand. Mentors offer social-emotional support and share their experience with a brain tumor diagnosis, treatment, and care. 

Patient & Family Meetings

These are half-day educational meetings that allow attendees to hear from and engage with experts about brain tumor treatments, including standard of care and clinical trials. They also provide the opportunity todiscuss methods to improve quality of life and understand invaluable resources in the community while sharing experiences with other brain tumor patients and loved ones. Learn more about Patient & Family Meetings.

National Conference

The ABTA National Conference is the only advocacy-led educational meeting designed specifically for patients, survivors, and caregivers that brings together the entire brain tumor community. Held annually, attendees will learn from the nation’s leading experts about the latest advances in research, treatment, and care. Learn more about the National Conference on the ABTA website.

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.

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.

Counselors

Social workers, counselors, and 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.