Advanced Cancer Care
People with ependymoma experience a wide variety of outcomes and no two experiences are exactly the same. For some, there comes a time where there are no further treatment options or the family decides to not pursue treatment options. Even though this is an extremely difficult time, there are resources to help patients and family members navigate end-of-life care. The resources below provide education and insight into important topics and issues to consider when dealing with advanced cancer.
National Brain Tumor Society
The goal of hospice care is to limit suffering and maintain as high a level of cognitive function as possible. Unlike palliative care, hospice is generally entered when a person is expected to live roughly 6 months or less and after the treatment goal turns from curative to comfort.
Similar to palliative care, hospice can be provided in a variety of environments, including at home, in a nursing home, assisted living facility, or hospital. Learn more and download a PDF for Key Questions for End of Life.
University of California San Francisco
Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care - A handbook published by UCSF Division of Neuro-Oncology
Overview: The goal of this handbook is to provide an overview of what a patient and his/her family and caregivers may expect when facing a progressive, life-threatening brain tumor. This handbook is specifically focused on providing effective care at home and at the end of life. Cancer involving the brain can either be primary, meaning that its origin was in the brain, or secondary, meaning that the cancer started elsewhere and spread to the brain. The incidence of secondary brain cancer is rising because treatment options for many cancers have expanded, sometimes resulting in improved survival, but also increased rates of spread to the brain. Some of the problems caused by brain tumors are in common with many other forms of cancer; however, there is a subset of challenging problems unique to brain tumors. We aim to address these unique issues in this handbook.
National Cancer Institute
You may have just been diagnosed with advanced cancer. Or perhaps you're struggling with the recurrence of cancer. Many people say when they heard the news they felt like they were in shock and couldn't hear anything else. Having advanced cancer can bring anxiety and uncertainty to your life. But remember that you’re still in control of your choices and actions. You get to choose how to move forward with your care.
Some people with advanced cancer can respond well to different treatments and continue to live for months or years. But others are at a point where there is no treatment available or their cancer can no longer be controlled. This is also called end-stage cancer or terminal cancer.
The following sections are specific to those with end-stage cancer. They may help you deal with the many changes that come with this diagnosis. You will learn more about ways you can help yourself and perhaps ease some of your concerns.
This page is dedicated in memory of Gretel who was an inspiration to countless others during her life.
Looking for ependymoma treatment centers?
At the CERN Foundation, we encourage all ependymoma patients to seek a medical opinion with neuro-oncologists that have experience with this disease.