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Q&A: Understanding Brain Tumor Treatment, Impact, and Research

, by NCI-CONNECT Staff

Dr. Mark Gilbert with patient


Our neuro-oncology providers share answers to important questions about brain tumor care, treatment, impact, and innovative research.

A primary brain tumor is a mass of abnormal cells that arises in the brain. An estimated 24,000 adults are diagnosed each year in the United States with a cancerous brain tumor. And brain cancers are less than 2% of all cancers diagnosed. This makes brain cancer more challenging to treat and study than other cancers.

To better understand brain tumor care, treatment, impact, and research, we talked to NCI’s Center for Cancer Research, Neuro-Oncology Branch Chief, Mark Gilbert, M.D., and Deputy Chief, Terri Armstrong, Ph.D.

Q: How are brain tumors diagnosed?

A: People most often have a sudden symptom like a seizure, migraine, or cognitive issue, and go to the emergency room or doctor. There, imaging tests, such as an MRI or a CT scan, can detect a brain tumor. Then, a biopsy is performed to remove a piece of tumor tissue for examining by a neuropathologist who determines the grade, tumor type, and genetic information. This is critically important to make an accurate diagnosis.

There are more than 100 different types of primary brain tumors and treatment is dependent upon the tumor type. A misdiagnosis can result in an inaccurate treatment plan. So, we strongly encourage patients to seek a second opinion to find a neuro-oncologist with experience treating their tumor type (see Guiding Questions to ask your doctor).  

A good time to get a second opinion is when the tumor is first diagnosed or if there is recurrence and patients are thinking about other treatment options. This helps patients feel comfortable about their treatment decisions. If seen at NIH, we always contact the referring doctor to let them know our thoughts and partner with them. To make an appointment or refer a patient, contact us at or call 1-866-251-9686.

Q: What are brain tumor treatment options?

A: There is no cookbook, as we say, that covers all brain tumors and how we treat them. We need very important information, starting with the tumor type and grade. And as our knowledge is expanding, we can rely on genetic changes within specific tumors to guide treatment. We also individualize treatment based on patient factors, including functional status and concurrent illness. This helps optimize the therapy for each patient.

That said, surgery to remove as much of the tumor as possible is typically the first treatment for brain tumors. The risks and benefits of surgery depend on the location of the tumor in the brain. We encourage patients to seek a neurosurgeon who is an expert in brain tumor neurosurgeries. Radiation therapy and chemotherapy are other treatments considered after surgery and can depend on the tumor grade – grade I tumors are usually not cancer and can be treated with surgery; grade II, III and IV tumors are cancerous and either have a higher chance of coming back or are fast-growing, so often need more treatment after surgery.

Q: What new brain tumor treatment approaches are you studying? 

A: There have been tremendous advances in our ability to investigate cancers. We can do genetic analysis to better understand the biology of the cancer to start asking questions about specific treatments. We consider these treatments targeted therapies. Meaning, we can personalize treatment based on the specific characteristics of the cancer. We are discovering that many cancers, even though they fall under the same name, have individual differences we can target.

Immunotherapy is a treatment that has been a fantastic advance in other cancers. Diseases that were previously incurable, physicians are now putting patients into long-term remission with immunotherapy. And we would like to see the same type of success in brain tumors. But we also recognize that treating brain tumors is more complicated than other cancers. It will likely turn out that it won't be a single immunotherapy that works. It will have to be a combination of strategies to overcome some of the difficulties in getting an immune reaction in the brain.

We have active clinical trials to better understand immunotherapy, as well as other therapies. Clinical trials are important to advance our knowledge and help us develop better and better treatments for patients with brain tumors. We need to focus energy and participation in clinical trials.

Q: How can brain tumors affect patients?

A: The impact of a brain tumor on patients can be great. It's estimated that over 50% of low and high-grade tumor patients have difficultly even returning to work from the time of diagnosis. We know that symptoms can occur at the time of diagnosis, but some can also occur throughout the time the person is dealing with the illness.

Researchers, like us, are focusing on understanding what that impact is on the patient and trying to improve it, specifically understanding the impact of our treatments. Within our clinical trials, we try to identify that and monitor patients throughout the trial. We are learning more about people living with the diagnosis of a brain tumor and the issues they face, including care issues, financial issues, and the impact on the extended family.

At NIH, we are focused on helping patients cope with their illness and deal with the issues they may face as a result of it.

Q: What is the future of brain tumor research?

A: There are a couple areas of investigation. We are working to understand the cell of origin of brain cancers. We don’t understand in most patients why cancer formed because the cancers are so uncommon. We are working with our colleagues in epidemiology to understand if some patients may have a susceptibility to cancer.

We have also discovered that cancer cells have a unique metabolism. There are active studies trying to target that metabolism to specifically target the cancer without causing side effects. This is called metabolomics.

I'm excited about the fact that we are making progress both at the genetic level to find targeted therapies and in immunotherapy. We are using techniques and approaches to study immunotherapy that are really cutting edge that will hopefully lead to a better understanding of immunotherapy for brain tumors and translate into much better treatment.

There is also a level of international collaboration that is unprecedented. Everybody recognizes that there needs to be a collective effort to make advancements. And so, the scale, scope, and sophistication of our clinical trials is increasing. We are integrating laboratory science with clinical research and, just as importantly, including patient outcomes measures in this research. This gives us insights into what our clinical trials really mean and how to build on them in a way that's never been done before.

To that end, building partnerships with providers, patients, and advocates to help patients with brain and spine tumors is the mission of NCI-CONNECT, our program supported by the Cancer Moonshot℠.  We are focusing on building the infrastructure for 12 rare central nervous system tumors to improve approaches to care and treatment, and if successful, expand to more tumor types.

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