Essential Resources on Brain Tumor Diagnosis and Treatment
Who to Talk to, Who Will Listen
Educational and emotional support is vital when responding to the unsettling news of a brain tumor diagnosis. Giving a smile to another patient, sharing information about treatment options, and providing general overall support is what “group” meetings are all about. Where to turn for treatment, how to break the news to family, and who to talk with about feelings and questions are among the many needs which we face and can discuss with the group.
While brain cancer may seem to be a lesser-known, lesser-studied, and lesser-funded disease, there exists a worldwide cooperative involving brain tumor patient support, advocacy initiatives, informational organizations, and clinicians. The SBTF strives to provide educational and emotional support to those on this journey by providing information about support services or links to various organizations or sites through which you might garner that educational and emotional support.
Support Groups
Throughout the year, the SBTF supports or hosts Brain Tumor Support Group meetings for patients, caregivers, friends, and families. These meetings provide an opportunity to share experiences, to learn about current therapies, and to receive information about various aspects of brain tumor diagnosis and treatment. Led by a Support Group Facilitator, the group setting allows individuals to share their experiences on the brain tumor journey, to ask questions, and to discuss progress. Topics will vary and a brochure, if available, will be posted in advance. Brain Tumor Support Group meetings provide an environment in which to discuss progress, treatments, and concerns with others who are going through the brain tumor experience. The information provided during the meetings is not intended to be a substitute for professional medical care or medical attention by a qualified practitioner.
The SBTF provides a listing of various brain tumor support group meetings in the Southeast; it does not provide recommendations or endorsements of specific physicians, medical institutions, products, procedures, or tests.
Find a brain tumor treatment center
When diagnosed with a brain tumor, you will be immediately presented with numerous decisions about your treatment and care. One of the important decisions you will mkae is choosing a brain tumor treatment center. Since brain tumors are considered a rare disease, treatment centers offer varying levels of brain tumor expertise and technology. It's important for you and your loved ones to evaluate treatment centers based on the care you may need.
The ABTA Treatment Center Guide provides detailed information about a variety of treatment centers, including the number of patients treated annually, technologies and specialized procedures offered, supportive services available, and more.
To further empower patients and their loved ones in making decisions that lead to better treatment and care, you can use these Guiding Principles for Central Nervous System Tumor Treatment Centers, as a resources for discussions with your healthcare team. *The Southeastern Brain Tumor Foundation was part of the working group to develop these Guiding Principles.
How To Help Me:
Developed by members of the Southeastern Brain Tumor Foundation Support Group as a resource for how friends can be of assistance to an individual or family coping with a diagnosis of a brain tumor.
Being of assistance to an individual is a wonderful gift. Being of assistance to a patient, who is unable to complete even the most routine of tasks, is priceless. Equally priceless is being of assistance to a patient caregiver. The brain tumor journey can be equally as daunting for both the patient and the caregiver and there are countless ways in which you can provide assistance to both.
First, start by making the statement “I want to help you” and complete the statement with something like “I have Thursday or Friday from 3:00 pm–6:00 pm available to come do laundry.” Follow that statement with the question “Which day works best for you?”
Believe it or not, the statement “I am available on X day” shows greater forethought and greater sincerity. It has far greater meaning than the statement “let me know if I can help.” If you truly want to be of help, rephrase your statement, and you’ll see what a difference a few words make. Below is a list of ways in which you can be of assistance to the patient and/or the caregiver:
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