Grey Matters North Texas Brain Tumor Support Group, founded in 1998, is a not-for-profit organization dedicated to providing emotional and logistical support to brain tumor survivors and their families. Our goal is to help them communicate easily with doctors, nurses, and other health care professionals, become more informed medical consumers, and feel more comfortable with the medical environment in which they now find themselves. We support research so that this devastating disease can be eradicated forever. The National Brain Tumor Society has a network of volunteers who would like to share their story to help you. They also have resources for a wide variety of tumor types and updates on the latest treatments. The National Brain Tumor Society holds walks in support of brain tumor research throughout the country.
YASG.com is a positive resource for young adults surviving glioblastoma.
VirtualTrials.com- The Musella Foundation For Brain Tumor Research & Information, Inc is a 501(c)3 non- profit organization dedicated to improving the quality of life and survival times for brain tumor patients by using computer technology to streamline the flow of information, organize the brain tumor community and raise money for brain tumor research.
The American Brain Tumor Association - The American Brain Tumor Association (ABTA) provides critical funding to researchers working toward breakthroughs in brain tumor diagnosis, treatment and care, with the ultimate goal of finding a cure.
The International Brain Tumor Alliance - The International Brain Tumor Alliance (IBTA) seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.
JerryKline.net - Jerry's paperback book, eBook and Audio Book titled "An Unremarkable Man" are available from Amazon, Barnes & Noble and Borders. All net proceeds from sales to the Legacy Brain Foundation.
What are the risk factors for brain tumors? Most brain and spinal cord tumors have no known risk factors and occur for no apparent reason.
How many people each year are diagnosed with a brain tumor? According to the Central Brain Tumor Registry of the United States, more than 40,000 Americans will be diagnosed with a primary brain tumor this year.
What types of brain tumors are there? There are two types of brain tumors. A primary tumor starts in the brain. A metastatic tumor is caused by cancer elsewhere in the body that spreads to the brain. Metastatic brain tumors are also called secondary brain tumors, since they come from cancer cells in another part of the body.
Are all types of brain tumors malignant (cancerous)? Primary tumors can be benign (non-cancerous) or malignant (cancerous). Metastatic brain tumors are always cancerous.
What is a benign tumor? A benign tumor can be removed or destroyed if located in an accessible area. They are slow-growing tumors. Benign tumors can recur and grow back after treatment of the initial tumor.
What is a malignant tumor? Malignant tumors (brain cancer) grow rapidly and invade, infiltrate and destroy normal brain tissue. Malignant tumors can recur and grow back after treatment of the initial tumor.
Can a brain tumor recur? Yes. A tumor can grow back after being removed or stabilized. The tumor commonly returns in the same area, but may develop in another part of the brain or spinal cord. Since it is not possible to predict whether or not a tumor will recur after receiving therapy, the patient will need to have follow-up appointments indefinitely, even if the tumor was benign.
How many people this year will be diagnosed with a metastatic brain tumor? According to the Central Brain Tumor Registry of the United States, 170,000 Americans will be diagnosed with a brain or spinal cord tumor that has spread from another part of the body.
What are common signs of brain tumors? Typical symptom of brain tumors include: headaches, seizures, nausea/vomiting, lack of coordination, difficulty swallowing, facial weakness, double vision, difficulty with speech, memory loss, weakness or numbness of the arms and/or leg or one side of the body, changes in vision, balance, hearing or sensation, changes in mood or personality.
How will my doctor diagnose if I have a brain tumor? If you suffer from any of the initial signs of a brain tumor, your doctor will likely conduct some tests. Your doctor will give you a physical exam to determine your overall health and a neurological exam to evaluate brain and spinal cord function. Imaging studies might be ordered, such as CT, MRI or PET scans to look for signs of a brain tumor. If studies or scans indicate you might have a brain tumor, a biopsy may be taken from the tumor to make an exact diagnosis. A spinal tap may also be performed to look for tumor cells.
What is a clinical trial? Clinical trails are studies designed to scientifically determine the effectiveness of various new treatment regimens.
Who conducts clinical trials? Clinical trials are conducted by various groups and institutions and are closely scrutinized by an Institutional Review Board (IRB). Each trail follows a treatment plan or protocol defined by the researchers initiating the trial.
Which trial is best for me? Which trial is best for you will depend on several factors. Factors like what type of tumor you have, when were you diagnosed, what treatments have you received and how well you are functioning will determine which trials you will qualify for. Investigate the study and determine if the treatment is right for you. It is impossible to tell you which treatment is best, but learning as much as you can before starting a treatment will help you to be prepared for what occurs during the trial process.
How does radiation affect a brain tumor? Radiation impacts cells by damaging DNA within the cell. The damaged DNA keeps the cells from being able to divide or reproduce. Over a period of time, cells within the tumor that received radiation will die when trying to divide.
What are side effects to radiation therapy? The most common side effects of radiation therapy are fatigue, loss of appetite, nausea, hair loss and short-term memory loss. These side effects are short-term and usually subside within two months after treatment is completed.
I have just received a diagnosis of a brain tumor. Should I get a second opinion? Yes.Some insurance companies require that a patient get a second opinion before undergoing major therapy. A second opinion should be obtained as soon as possible to avoid delaying treatment. A second opinion will confirm the initial diagnosis and help to validate the suggested courses of treatment.
How can I return to work after a brain tumor diagnosis? The Americans with Disabilities Act of 1990 (ADA) prevents job discrimination for disabled individuals. If you can perform the essential duties of a job, by law the employer is required to make reasonable accommodations for your disability. Federal and state disability programs offer temporary and permanent benefit programs of financial assistance to those who cannot return to work. A social worker at the hospital or local social service agency can provide more detailed information on these programs and possibly assist you in applying for financial assistance. The Social Security Administration offers two programs for people with disabilities: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Both programs define disability as “a medically determinable impairment which results in marked and severe functional limitations and which can be expected to result in death, or which has lasted or can be expected to last for a continuous period of not less than 12 months.
For more information about SSDI, call 1-800-772-1213 or visit www.ssa.gov
The difficult task of trying to find information or resources to help guide someone through the first few critical weeks and months of a diagnosis can be stressful, draining, and mentally challenging; things which are overtly detrimental to the overall wellness (mentally, physically, emotionally, and spiritually) of brain tumor survivors and co-survivors.
To assist those going through this challenging time, the Legacy Brain Foundation is striving to develop a comprehensive resource database to address many of the questions and concerns raised by those whose lives have been touched by a neurological tumor or cancer diagnosis. This is a critically important part of our mission as it both provide assistance to those in need and raises awareness of this disease.
If you or a loved one have been personally affected by a diagnosis, feel free to contact us if you have questions, need assistance, know of resources that have been helpful to you in your journey, or have other resources you would like to see included on the Legacy Brain Foundation site. If your resource is deemed beneficial and aligns to the Legacy Brain Foundation's mission and goals, we will do our best to place it in the appropriate section.
If you know of someone who has been recently diagnosed and is searching for assistance, please direct them here. You will be helping them more than you could imagine.