First Steps After Receiving a Brain Tumor Diagnosis
“You have a brain tumor…” If you’ve recently been on the receiving end of these words you are most likely experiencing a range of emotions. We understand it can be overwhelming trying to process the diagnosis, understand a new and challenging vocabulary, and weigh life-altering decisions about your course of treatment. To help you navigate the early days of a brain tumor diagnosis, the ABTA created the guide below to empower you with information and resources to make informed decisions from day one.
It is natural that the first reaction to a diagnosis is shock. It can take some time to come to terms with the news. Some newly diagnosed patients don’t feel like they can absorb any more information, while others desire more information right away. After you’ve had some time to process, it’s important to educate yourself about your brain tumor and treatment options. The ABTA provides the following tools to empower patients to make well-informed treatment decisions.
Health care team: It’s understandable that after your diagnosis you may have left your doctor’s office or hospital not knowing what questions to ask. The ABTA created this list to help you make the most of your next appointment. Questions to ask your health care team.
Understand your diagnosis and learn about your options before making any treatment decisions.
To learn more about your tumor type and your tumor grade, visit the brain tumor information section of ABTA’s website.
A single tumor may contain several grades of cells. The highest or most cancerous grade of cell determines the tumor grade, even if most of the cells are a lower grade. Some tumors undergo changes. A lower-grade tumor might recur as a higher-grade tumor. Your doctor can tell you if your tumor might have this potential.
Brain tumor treatments are not all the same. They depend on the type and grade of brain tumor, its size, shape, and location in the brain, along with other factors like your overall health and age.
Many times, treatment includes surgery, followed by some type of radiation therapy and/or chemotherapy. There may be additional options available to you through your health care provider or clinical trials, which are research studies of new treatment methods.
Learn more about treatment options.
Download the Newly Diagnosed handbook (PDF)
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There are some things you should consider early (pre-surgery) in the process in order to open up options down the road. During surgery, it’s important to collect and save enough tissue to meet eligibility for certain clinical trials and/or maximize your treatment options.
Personalized medicine, for example, utilizes a patient’s genetic information to determine the best course of treatment. The brain tissue gathered from surgery can be tested (molecular testing) to determine the genetic make-up and biomarkers of the tumor. A biomarker is a characteristic that is objectively measured and evaluated as an indicator of biological or pathogenic processes.
Biomarkers can help predict the response and sensitivity of the tumor cells to certain treatments. Research has shown that doctors can use biomarker information to guide the optimal course of treatment that is individualized for the patient.
In 2016, the World Health Organization (WHO) reclassified central nervous system (CNS) tumors. Historically, tumors were diagnosed by the way they looked under a microscope (histology). The updates, informed by leading neuro-oncologists and neuropathologists, recommends a layered approach to classifying a tumor using both the histology and the tumor's biomarkers. Learn more.
TYPES OF BIOMARKERS: The chart below lists specific biomarkers and their possible roles in brain tumor diagnosis, prognosis and prediction of response to therapy and treatment. View the PDF
Seeking a Second Opinion
Don’t be afraid to consult another doctor for a second opinion before starting treatment. A second opinion from a brain tumor specialist can offer a new perspective about your diagnosis and may offer additional treatment options. Some insurance plans require a second opinion, while others may cover a second opinion if the patient or doctor requests it. Below are a few tips for seeking a second opinion.
Gather all of your medical records from the time of diagnosis: this will include all imaging tests, pathology slides, blood work, and any other testing that may have been done.
Check with your insurance company: if you are seeking an opinion with a doctor outside of your network ask about the costs and advocate for yourself to get the treatment and care that you desire.
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Ask your doctor or a trusted source for a brain tumor specialist referral: When surgery or long-term treatment is involved, most doctors welcome a colleague’s opinion and can help by providing a recommendation. If your doctor is unable to recommend a brain tumor specialist for a second opinion, call the ABTA at 800-886-ABTA (2282) to help you locate a brain tumor treatment center.
Go with the best assessment: It’s possible that the treatment plan from the doctors will be different. To weigh your options, ask yourself about the potential benefits of each. Talk over some of your concerns with the doctors. In some cases, a third opinion is warranted.
If you have insurance, working with your insurance company is a necessary and sometimes difficult part of the journey you will take. Insurance can often be complex and confusing to understand. It is important to review your policy, noting key points such as any deductibles, pre-authorizations needed, formulary list of medications covered and any limitations to your coverage.
If you don’t have insurance, contact the social worker at the hospital. The social worker can outline insurance options, federal assistance programs, local and national funding organizations and other ways to help you find alternative forms of health care coverage.
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When you or your loved one calls your insurance provider to inform them of your condition, be sure to:
- Review your policy prior to the call, noting any questions or concerns that you have.
- Record the name of the person you speak with.
- Get the “case number” assigned to your claim so you can refer to it in future calls.
Finding a Treatment Center
You want the best treatment available provided by a multidisciplinary team of brain tumor specialists who can provide the latest in specialized treatments.
View a list of treatement centers.
The ABTA recommends that you compare brain tumor centers by looking at a few key factors:
Number of Brain Tumor Patients: Find out how many brain tumor patients are treated at the center, and specifically ask how many patients with your tumor type have been treated
Access to specialists: In addition to your Neuro-Surgeon, a team of specialists will be involved in your care. How many of these specialists does the treatment center offer:
- Radiation Oncologists
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Insurance Coverage: Call your insurance company to see what brain tumor treatment centers are covered under your insurance plan
Clinical trials: Does the treatment center conduct clinical trials or provide patients access to clinical trials?
It is important that you find the support you need to get you through the brain tumor journey. Talking through your questions, concerns and emotions can help you as you move forward.
The American Brain Tumor Association is here for you every step of the way. Our caring professionals are available through our CareLine to provide support and connect you to resources. Contact the ABTA toll free at (800) 886-ABTA or email ABTAcares@abta.org.
Doctors, nurses and other members of your health care team can offer answers and advice to issues you are facing.
Social workers, counselors or members of faith can provide support and resources.
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Friends and family can help with many aspects of your care. From attending appointments to helping around the home, it’s important for you to ask for help when you need it.
Support groups, either in person or online, can be a great outlet to share your feelings and learn about what other people are experiencing.
You can access additional resources on the ABTA’s website, including on-demand webinars about a variety of topics affecting brain tumor patients and their caregivers. View the full webinar library.