Being told you have a brain or spine tumor can be shocking and overwhelming. As you find yourself facing complex decisions about treatment options, self-care and supportive resources, we offer comprehensive care together with your doctors back home.
At the NCI’s Neuro-Oncology Branch at National Institutes of Health (NIH), we have over 20 years of experience working with patients worldwide along with their primary oncologists to offer a comprehensive approach to patient care. We provide consultations free-of-charge for patients who are recently diagnosed with a primary brain or spinal cord tumor, those seeking a second opinion on their diagnosis or treatment, or those who have recurrent tumors. Patients can also visit us if they do not have a formal brain or spine tumor diagnosis but have recent imaging suggesting a primary brain or spine tumor.
To make an appointment, contact us at NCINOBReferrals@mail.nih.gov or call 1-866-251-9686 or 240-760-6010 (Monday to Friday, 9:00 a.m.–5:00 p.m. ET).
Care at the Neuro-Oncology Clinic
A Multidisciplinary Approach to Care
Consultations with branch providers at the Neuro-Oncology Clinic in Bethesda, Maryland, include our neuro-oncology physicians, nurse practitioners, research nurses, and social workers. While NIH does not cover expenses for medical services at other facilities, tests and treatments at NIH are free-of-charge after a patient is accepted on clinical study.
Our multidisciplinary approach to care paves the way for us to help patients and their families deal with both the physical and emotional aspects of this disease with resources to help cope with the diagnosis and treatment of a brain or spine tumor.
We also work closely with our colleagues in neurosurgery, radiation oncology, and radiology, as well as the patient’s primary doctor at home, to provide personalized and expert care.
- Pathology: we use tumor tissue to precisely diagnose your tumor type, which helps us determine clinical trial eligibility and make accurate treatment decisions for your specific tumor to maximize clinical outcomes.
- Imaging: we use the latest imaging techniques to give a detailed understanding of the potential for tumor growth and response to treatment. This helps our clinical team more accurately detect small but potentially significant changes in a tumor.
- Surgery: we remove as much tumor as safely possible while not damaging healthy tissue using state-of-the-art surgical techniques and extensive pre-surgical planning.
- Radiation: we use cutting-edge radiation therapy technologies that intensely focuses energy targeting the tumor while minimizing the radiation delivered to normal brain or spine tissue.
In addition to a general consultation or second opinion, patients have the potential to participate in one of our many clinical studies. We typically have between 5-10 active clinical studies for primary brain or spine tumors open, ranging from observational studies and symptom management to testing new drugs and tumor-focused interventions.
If the patient decides to participate in a clinical study, they will visit the NIH for consultations, follow-up, and imaging as needed free-of-charge. Much of their direct care will be transferred to our physicians and nurses for the duration of the study, although the patient will continue to be closely monitored by their referring or primary physician in collaboration with our clinical team.
Patients can contact the Neuro-Oncology Clinic directly to make an appointment on their own or through a physician referral. We request that the patient or family member contact us directly to facilitate the consent process for the visit. Following consent, our patient care coordinators will provide instructions to send medical records.
We provide care for people with primary brain and spine tumors at various stages of their disease, including if:
- they are newly diagnosed or have a recurrence and need to make a treatment decision
- they are interested in a second opinion on follow-up care
- they are interested in improving their care and the care of future patients
After you contact us, our patient care coordinators will follow-up with you within 48 hours. Please expect appointments to be scheduled a minimum of 2-3 weeks after we receive all medical records, forms and pathology materials.
- To make an appointment or refer a patient, contact us at NCINOBReferrals@mail.nih.gov or call 1-866-251-9686 or 240-760-6010 (Monday to Friday, 9:00 a.m. - 5:00 p.m. ET). If you are an international patient, you must be referred by your local oncologist.
- Our patient care coordinators will briefly discuss your diagnosis and send you the intake form to complete. This will include demographic information and your medical history. Next, you will talk with a research nurse where you will be able to ask any questions you have. They will then send you a consent form to complete. After your forms are complete, our patient care coordinators will schedule an appointment with you.
- Before your first visit, we will ask you to provide medical records. This includes all available MRI and CT scans related to your brain or spine tumor diagnosis, corresponding radiology reports, and a list of medications and pathology material from the most recent surgery (including biopsies). Your most recent MRI should be within 30 days of the appointment and we also require a recent progress note from your treating physician. Other records, including surgery, radiation, and treatment summaries may be requested to determine trial eligibility.
The Neuro-Oncology Clinic is located on the NIH campus in Bethesda, Maryland, on the 13th floor of the NIH Clinical Center (Building 10).
The NIH and the Clinical Center provide information on transportation, patient services, places to stay while you visit and how to get around the hospital.
A brain or spine tumor diagnosis can greatly impact all aspects of your life. Physical, cognitive or memory changes can be caused by the tumor, and removal of the tumor or treatment can affect your quality of life. This can be challenging for you and your loved ones, and you will face unique challenges in each stage of your cancer journey. To help you cope and be informed, visit our recommended resources listed below.
Neuro-Oncology Branch Resources
- Neuro-Oncology Branch Twitter Follow us at NIHBrainTumor to receive updates on the latest in brain and spine cancer research, care and treatment.
- NCI-CONNECT Community Join our Facebook page, NCI-CONNECT Community, to connect with other tumor patients and their caregivers.
- NCI-CONNECT Rare Brain and Spine Tumor Network If you have a rare brain or spine tumor, find more information on diagnosis, grading, tumor types and treatment options.
- My STORI Mobile Application If you or your loved one has a brain tumor, download this free mobile application to track and manage symptoms and self-care activities.
- Living With a Brain or Spine Tumor View questions to ask your health care team, ways to manage your self-care, and treatment and support resources for each stage of your cancer journey.
- NIH Wellness Toolkit Guidance to help you improve your health needs. Learn how to manage your surroundings, feelings, body, relationships and health.
- NCI Coping with Cancer Learn how to cope with feelings and cancer, adjusting to cancer, self-image and sexuality, day-to-day life, support for caregivers, survivorship and questions to ask your doctor.
- Brain and Spine Tumor Organizations Find support and connect with others impacted by a brain or spinal cord tumor.
- Brain and Spine Tumor Patient and Support Resources Find services to help you find the right clinical trial or treatment center, advocate for yourself or a loved one, and connect with others.
- NCI Brain and Spine Tumor Information Learn more about the many different brain and spinal cord tumor types and how they are treated. Find information about brain cancer statistics, research and clinical trials.
- NCI Did you Know? Watch this video to learn about the different types of brain and other nervous system cancers in children and adults, risk factors, symptoms, and survival trends.