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? E-mail us at nciconnect@mail.nih.gov.
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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
Dalouny has been living with a brain tumor called a glioblastoma since 2018, and tried many treatment approaches before coming to NIH. Today, she 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 has endured multiple surgeries, radiation, and drug treatments, including an immunotherapy clinical trial, and has adjusted her life to live fully and joyfully 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 approach to life that includes daily healthy routines and the pursuit of a greater purpose.
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Brain and Spine Tumor Survivors Share How to Cope
To help you manage effects caused by brain or spine tumor, patients share tips so you can cope in a positive way.
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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 the long-term side effects and positive experiences from 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 treat 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 rare tumor survivor. Although his treatments caused long-term side effects, he shares why he believes he is lucky to be alive and his hopeful advice to others.
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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 and the lifelong impact. She also shares important advice to manage chemotherapy and stay 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 is surgery. She shares how she found expert care, support, and resources to prepare her for surgery.
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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 and recovered fully from surgery, and now wants to help others.
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Connecting with Others with a Rare Cancer Diagnosis
Marcela discovered an ependymoma in her spinal cord. Living internationally, she shares how she found support online and chose to participate in a study to help others.
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Advice from the Brain Tumor Community
To help guide you through your brain tumor journey, patients, caregivers, doctors, and advocates share their advice.
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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 age four when she had her first surgery to remove a brain tumor. Years later, she finally received an accurate diagnosis: PNET. She shares how she positively copes and finds hope.
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Midline Glioma Cancer Survivor Joins Study to Help Others
José shares how he learned about his 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. She shares what it is like to live with a type of rare brain cancer called meningioma to help others.
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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 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 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 experieces 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 to an international brain tumor organization.