An initial brain tumor diagnosis confronts you with difficult decisions, from making sense of your situation to deciding who you can trust to help you from a medical perspective. It can feel like time and knowledge are not on your side. Medical terms can be difficult to understand and the number of tests you must quickly undergo can feel disorienting, especially when you hear that surgery needs to happen very quickly.
Because it’s so important to move quickly following your initial diagnosis, the first step is to get a clear understanding of your situation, take stock of your tools and resources, and go forward with a sound plan.
If you haven’t had surgery or a biopsy yet, diagnosis happens in three steps. Based on the symptoms you have, a doctor will perform a series of physical tests. Second, the presence of a tumor is confirmed with imaging tests – generally an MRI – which give you and your doctor a picture of the mass and surrounding brain structures. Your doctor may also order other imaging tests in addition to an MRI. Third, surgery is performed to obtain tissue to determine the type and grade of the tumor. This surgery may be a needle biopsy or what is called a craniotomy, in which as much of the tumor is removed as possible.
You decide who will make up your treatment team and what approach you’ll pursue. The tools in this section can help you better understand tests, tumor types and grades, as well as the all-important question of how to find top brain tumor centers, how to choose your team, what you should discuss with your surgeon and other providers, and how to find out about all your treatment options.
Finding out that you or your loved one have a brain tumor can feel overwhelming. Doctors will perform many tests using medical equipment and terminology you are unfamiliar with. Learning this process can help you feel more comfortable and confident you are making the right medical decisions.
Learn where the tumor is located within the brain to help you understand what symptoms may occur.
Possible symptoms that can be related to the location of the brain tumor or increased pressure.
When a brain tumor is suspected or confirmed, your doctor will have you undergo one or more tests to diagnose or monitor it.
There are more than 120 types of brain tumors. See the most common brain tumor types.
It is important to have confidence in the doctor and the health care team doing your surgery or providing your treatment and follow-up care. Whether this is someone you have chosen yourself, or a doctor or surgeon you have been referred to, it’s important that you make sure that he or she is qualified.
Members of your neuro-oncology medical team that may be involved in your care.
Questions to ask your surgeon to help you decide if surgery is the best treatment option and prepare you for surgery.
It is critical to remove as much of the brain tumor as possible, while not damaging healthy tissue. Brain tumor surgery is most successful when it is performed by a neurosurgeon with a great deal of experience. As a patient, you have the right to seek out multiple opinions. This can help to answer questions that you have and confirm the surgical plan. Seeking a second (or even a third) opinion may also be encouraged by your surgeon or your insurance plan. Talk to your surgeon about your plans to seek out a second opinion, for recommendations on who to see and the time frame that is recommended to seek the opinion.
A brain tumor diagnosis can leave you feeling uncertain over what the future holds. Acknowledge your fears and concerns, as well as share your strength with others. Whether you decide to turn to family and friends, your medical team, social workers or support groups – online or in-person – never forget that you are not alone on your journey.
Brain cancer can impact all aspects of your life. There are resources available to help you cope.
Guidance on ways to care for yourself, your loved ones and read stories from other brain tumor patients.
Join the celebration of people who are fighting brain tumors while being an inspiration to those who are carrying forward.