Living with a Brain or Spine Tumor

Living with a rare brain or spine tumor can impact all aspects of your life. Physical or thinking and memory changes can be caused by the tumor, removal of the tumor, or treatment and can affect your quality of life. This can be challenging for you and your loved ones. And in each stage of your cancer journey, you will face unique challenges. View questions to ask your health care team, ways to manage your self-care and symptoms, and treatment and support resources. Hear from patients and caregivers living with rare central nervous system (CNS) tumors to guide you through your journey.

Newly Diagnosed

If you just found out you have a brain or spine tumor, learn common symptoms, how your tumor type is diagnosed, how to find the right healthcare team and resources to guide your care decisions.
In Treatment

If you are starting treatment or are in treatment now, learn about your options, including clinical trials, how to find an expert doctor, and resources to help you cope and make treatment decisions.
Having a Recurrence

If your tumor has come back, learn about treatment options and resources to help support you.
Finished Treatment

If you have completed treatment, learn more about your follow-up care plan and resources to help you move into a new post-cancer normal.
Guiding Questions

Use these questions to help you find expert care and make care and treatment decisions.
Managing Your Symptoms

NCI-CONNECT offers strategies to manage rare brain and spine tumor symptoms.
Managing Your Self-Care

Learn positive self-care strategies to help you get through each day, so you can continue to live fully.
Related Organizations

Get links to brain and spine tumor organizations that provide support and help patients and their families connect with others.
Rare Brain and Spine Tumor Stories

Get advice, tips, support, and inspiration from patients and caregivers living with a rare CNS tumor.