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. Topics included: Choices for Care When Treatment May Not Be an Option , Talking about Advanced Cancer, Coping with Your Feelings, Planning for Advanced Cancer, Advanced Cancer and Caregivers, Questions to Ask Your Doctor about Advanced Cancer
CaringInfo - A Program of the National Hospice and Palliative Care Organization provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. CaringInfo’s goal is that all people are making informed decisions about their care. Understanding and discussing topics like advance directives, palliative care, caregiving and hospice care may feel overwhelming on top of dealing with a serious or life-limiting illness. Our guides and resources are here to help you through the journey you are on and to aid you in understanding the choices you have.
The Conversation Project
The Conversation Project is a public engagement initiative with a goal that is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected. Together we can make these difficult conversations easier. We can make sure that our own wishes, and those of the people who matter most to us (our loved ones, friends, chosen family), are both understood and respected. The Conversation Project offers free tools, guidance, and resources to begin talking with those who matter most about your and their wishes.
MyDirectives helps people record their medical treatment wishes, palliative and hospice care preferences, organ donation status, and other critical information on the device, and in the format, that is most convenient for them. MyDirectives is secure, easy to understand, and always FREE to use. MyDirectives’ easy-to-use platform combines thoughtful questions, helpful tools and options that educate and guide people through the process. MyDirectives even offers users the ability to include audio and video messages designed to create a superior advance care plan.
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.