Rare Brain and Spine Tumor Stories
Hear advice and tips about care and treatment from patients and caregivers living with a rare central nervous system (CNS) tumor. Reading these stories can help guide and inspire you through your journey.
Have a rare CNS tumor and want to share your story? Email us at NCICONNECT@mail.nih.gov.
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Community and Spirituality Help Five-Time Ependymoma Survivor Embrace Diagnosis
Paul has lived with a recurring ependymoma of the brain and spine for most of his life. In that time, he has found connection in the NCI-CONNECT community, comfort in spirituality, and trust in his care team.
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A Data-Driven Approach to Self-Care After a Brain Tumor Diagnosis
As a physician and researcher, Debra learned to advocate for herself during treatment by finding reliable online sources, interviewing multiple care providers, and participating in a clinical study.
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Former Nurse Accepts a New Reality After a Brain Tumor Diagnosis
Steve was a nurse for many years and found meaning in caring for others. But when he was unable to return to work after being diagnosed with an IDH-mutated astrocytoma, he found other ways to lead a fulfilling life.
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Navigating a Rare Brain Tumor Diagnosis: A Care Partner’s Perspective
Liz never imagined that she would become a care partner to her vibrant husband Julio because of an ependymoma diagnosis. She shares their journey and how they work together as a team through the good times and the bad.
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Facing a Brain Tumor Diagnosis with Strength and Resilience
Glioblastoma survivor Dalouny continues to defy the odds and live life to the fullest with her family, friends, and a fulfilling career.
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Why People with Rare Tumors Should Find a Good Medical Team
Jen has lived with an ependymoma for over eight years and undergone multiple treatments, including three brain surgeries. She shares how her determination to go back to work and find a good medical team has helped her live her best life.
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Rare Spine Cancer Survivor: “Ain’t Nothin’ Gonna Steal My Joy!”
Lynita has lived with ependymoma for 17 years. She shares how she endured multiple surgeries, radiation, and drug treatments—and has adjusted her life to live fully with physical limitations.
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Near-Death Experiences Guided by Faith
Tom survived a car crash, two bouts of cancer, and an autoimmune disorder. He shares how faith got him through hard times and changed his outlook.
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Finding Your Best Path and Fighting Brain Cancer
Robert shares how surviving a rare brain cancer has given him a new perspective and changed his approach to life, which now includes daily healthy routines and the pursuit of a greater purpose.
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Brain and Spine Tumor Survivors Share How to Cope
Patients share tips to help you cope in a positive way and manage the effects of a brain or spine tumor.
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Surviving Life-Altering Effects of a Brain Tumor
Carol has spent nearly half her life living with her ependymoma diagnosis. She shares her long-term side effects and positive experiences from throughout her cancer journey.
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Family Support during Spine Tumor Diagnosis
Andrea’s two children, husband, and parents have all been affected by her ependymoma diagnosis. She shares how they adjusted and provided support.
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What to Expect During and After Radiation Treatments
Nick had four surgeries and multiple radiation treatments to address his ependymoma tumors. He shares what to expect during and after radiation—and how cancer changed his outlook on life.
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Medulloblastoma Survivor Shares 5 Tips to Overcome a Rare Diagnosis
Ken is an 18-year survivor of a rare tumor. Although his treatments caused long-term side effects, he shares why he believes he is lucky to be alive.
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Things to Know About Chemotherapy for a Brain Tumor
Giselle shares her treatment journey with five brain tumors over 23 years. She gives important advice for managing chemotherapy and staying positive.
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Deciding If and When to Have Surgery for a Spine Tumor
Beth discovered a tumor in the center of her spinal cord and the only treatment was surgery. She shares how she found expert care, support, and resources to help her make a decision.
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Spinal Cord Tumor Survivor Shares Tips to Prepare and Recover from Surgery
Lee was shocked to learn he had a tumor in his spinal cord that required surgery. He shares how he found the right neurosurgeon, prepared for surgery, and recovered fully.
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Connecting to Others with a Rare Cancer Diagnosis
Marcela discovered an ependymoma in her spinal cord. She shares how she found support online and participated in a study while she was living internationally.
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Advice from the Brain Tumor Community
Patients, caregivers, doctors, and advocates share their advice to help guide you through your brain tumor journey.
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Adjusting to a New Life After Brain Surgery
Stu shares how the long-term physical impacts after brain surgery, including vision, balance, and speech difficulties, have helped him appreciate the minutia of life and enjoy the world around him.
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Cancer Survivor Shares 3 Tips to Enhance Your Visit to NIH
Sarah was 37 years old when she was diagnosed with an ependymoma. She has been coming to NIH for care for four years. Sarah shares her tips to help others.
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Four-Time PNET Survivor Shares Coping Tips
Dunamis was four years old when she had her first surgery to remove a brain tumor. Years later, she finally received an accurate diagnosis.
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Midline Glioma Cancer Survivor Joins Study to Help Others
José shares how he learned about the rare midline glioma cancer in his spine, and why he chose to participate in a clinical study to help others.
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Meningioma Survivor Finds Meaning in Rare Cancer Diagnosis
Deborah is a two-time cancer survivor. In hopes of helping others, she shares what it is like to live with a type of rare brain cancer called a meningioma.
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Inspiring Messages from the Brain Tumor Community
To help motivate you through your journey as a brain tumor survivor or caregiver, others in the brain tumor community share some words of encouragement.
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PXA Tumor Survivor Starts His Life Over After Learning He Was Misdiagnosed
Darien shares how he lived with what he thought was an aggressive brain cancer for eight years. Then, he got an accurate low-grade rare tumor diagnosis and made a fresh start.
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Pineal Region Tumor Survivor Lives Fully with an Inoperable Tumor
A pineal region tumor survivor shares how he found the best care, treatments, and resources to live.
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Medulloblastoma Survivor Finds Hope in Clinical Trials
A mother shares her family’s 11-year quest to find the best treatments for their daughter’s medulloblastoma tumors.
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Two-Time Oligodendroglioma Survivor: Never Give Up Hope
A brain tumor survivor shares his experience with oligodendroglioma and advice for others.
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Two Sons with a Rare Brain Cancer? We Choose to Fight through Advocacy
Read how a father is advocating to save his two sons with oligodendrogliomas, and how his family copes.
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Maintaining Hope: Three Decades Living with Ependymoma
Learn how a patient with an ependymoma in her spine has survived the disease for over 30 years. She shares her treatment experiences and coping tips.
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Caregiver Journey Leads to an International Brain Tumor Patient Organization
A brain tumor caregiver shares how her journey supporting her son led her to create a worldwide community for brain tumor patient organizations and others in the field of neuro-oncology.