The MIT Braintrust Center for Neurological Disorder Information

Brian Tumors

Brain tumors are masses created by the growth of abnormal cells or uncontrolled proliferation of cells in the brain.  Any abnormal growth within the skull creates a special problem because it is in a confined space and will press on normal brain tissue and will therefore interfere with the functions of the body controlled by the affected parts. This is true whether the tumor itself is benign or malignant. Fortunately, the functions of certain areas of the brain are well known, and a disturbance of some specific function guides physicians readily to the affected area. If diagnosed early, a benign tumor often can be removed surgically with a good chance of recovery. Malignant tumors are more difficult to remove.

 Part 1: General Information
 Part 2: Self-Help
 Part 3: Further Information

I. General Information

Benign tumors represent half of all primary brain tumors. Their cells look normal, grow slowly, and do not spread (metastasize) to other sites in the body. Benign tumors can be serious and even life-threatening if they are situated in vital areas in the brain where they exert pressure on sensitive nerve tissue or if they increase the fluid in the brain. While some benign brain tumors may pose a health risk, including risk of disability and death, the majority is usually successfully treated with techniques such as surgery and radiation.
Malignant tumors are further classified into primary tumors and secondary (metastatic) tumors.  A primary malignant brain tumor is one that originates in the brain itself. Primary brain tumors occur at all ages but tend to occur in two peaks: in adults, between ages 55 and 65 and in children, between ages three and 12. About 90% of primary brain tumors occur in adults, representing about 15,000 new cases every year. Primary brain tumors often shed cancerous cells to other sites in the central nervous system, which include the brain or spine, although they rarely spread to other parts of the body.  A secondary brain tumor occurs when cancer cells spread to the brain from a primary cancer in another part of the body. Secondary tumors are about three times more common than primary tumors of the brain.
The causes of brain tumor are not known.  About 5% of primary brain tumors are associated with hereditary disorders, including Li-Fraumeni cancer family syndrome, p53 defects, tuberous sclerosis, von Recklinghausen's disease (neurofibromatosis), von Hippel Landau disease, familial polyposis (Turcot's syndrome), and Osler-Weber-Rendu syndrome.
Brain tumors produce a variety of symptoms ranging from headache to stroke. They are great mimics of other neurologic disorders. Symptoms occur if the tumor directly damages the nerves in the brain or central nervous system or if its growth imposes pressure on the brain. Some gliomas develop gradually and symptoms may be subtle for a long time, making an early diagnosis difficult.
Headache is probably the most common symptom of a brain tumor. It should be strongly emphasized, however, that headaches are so rarely caused by brain tumors that no one with a headache -- even a severe, persistent one -- should suspect brain cancer as its cause. Some features of headaches caused by brain tumors include pain that is steady and worse in the morning than in the afternoon; pain that is persistent and associated with nausea or vomiting but is not a migraine; pain that comes and goes but does not throb; and pain that is accompanied by double vision, weakness, or numbness. Headaches caused by brain tumors may rouse a person from sleep and may worsen with coughing or exercise or with a change in body position. Some people also experience neck pain.
Seizures occur in about 20% of patients with brain tumors above the cerebellum. As with headaches, however, seizures are not commonly caused by brain tumors. Often tumors cause partial seizures, in which one area of the brain is affected. In such cases, a person does not lose consciousness but may experience confusion, jerking movements, tingling, or odd mental and emotional events. Generalized seizures are caused by disturbances of nerve cells in diffuse areas of the brain and therefore have a more severe and widespread effect on the patient.
Gastrointestinal symptoms are also common and include nausea. Nausea and vomiting often occur in children with brain tumors and in all people with brain stem cell tumors.
Sometimes the only symptoms are changes in mental and other behaviors, including memory loss, impaired concentration, problems with speech and reasoning, and general confusion. People with brain tumors often sleep more than usual.
Other important symptoms include the following: gradual loss of movement or sensation in an arm or leg; unsteadiness; unexpected visual disturbance (especially if it is associated with headache), including vision loss -- usually of peripheral vision -- in one or both eyes or double vision; hearing loss with or without dizziness; and speech difficulty.
Changes in personality or mental ability are rare in cases of brain tumor. When such changes occur they may take the form of lapses of memory or absent-mindedness, mental sluggishness, or loss of initiative.
Examination often shows focal (isolated location) or general neurologic changes that are specific to the location of the tumor. Some tumors may not show symptoms until they are very large and cause rapid neurologic decline, others are characterized by slowly progressive symptoms. Most brain tumors will include signs typical of space-occupying masses (aggregations of cells) which cause increased intracranial pressure and compression of brain tissue.
The diagnosis may be confirmed, and the tumor localized, by CT scan of the head or MRI of the head Angiography of the head shows a space-occupying mass, which may or may not be highly vascular. EEG may reveal focal (localized) abnormalities. Examination of tissue removed from the tumor during surgery or CT scan-guided biopsy is used to confirm the exact type of tumor.
Brain tumor is treated surgically. As a result of recent progress in the methods of brain surgery, many cases of brain tumor can now be operated on successfully.  Some may be completely excised (removed). Tumors that are deep, or that infiltrate brain tissue, may be debulked (removal of much of the mass of the tumor to reduce its size). Surgery may reduce intracranial pressure and relieve symptoms in cases when the tumor cannot be removed. Stereotactic (CT scan-guided) surgery may be helpful in removing deep tumors.  Radiation therapy may be advised for tumors that are sensitive to this treatment. Anticancer medications (chemotherapy) may be recommended.  Other medications may include corticosteroids such as dexamethasone to reduce brain swelling and osmotic diuretics such as urea or mannitol to reduce brain swelling (and associated increased intracranial pressure).   Anticonvulsants such as phenytoin can be used to reduce seizures and analgesics in controlling pain.

II. Self-help

Support Groups:
This site lists over 80 support groups nationwide by states. It also lists international and internet-based brain tumor support groups.

The Brain Tumor Society
124 Watertown Street, Suite 3-H
Watertown, MA 02472
1-800-770-TBTS (8287)
(617) 924-9997 Fax (617) 924-9998
Raises and allocates funds for basic scientific research. Conferences for patients and professionals, resource guide and educational materials, public education, access to psychosocial support including telephone networks, and quarterly newsletter, Heads Up.

American Brain Tumor Association
2720 River Road, Suite 146
Des Plains, IL 60018-4110
(800) 886-2282 * (847) 827-9910
Written information about specific brain tumors, treatments and clinical trials; patient conferences, phone line, newsletter, The Message Line; funds research.

Brain Tumor Foundation for Children, Inc.
1835 Savoy Drive
Suite 316
Atlanta, GA 30341
(770) 458-5554 * (770) 458-5467
Promotes public awareness and information activities, family support and educational programs, funds research; also provides periodic newsletter.

Central Brain Tumor Registry
of the United States (CBTRUS)
3333 West 47th Street
Chicago, IL 60632
(773) 579-0021
(630) 655-4786
FAX: (630) 655-1756
A not-for-profit corporation that collects data on primary benign and malignant brain tumors into a central database.

Childhood Brain Tumor Foundation
20312 Watkins Meadow Drive
Germantown, MD 20876
(301) 515-2900
Heightens public awareness of childhood brain tumors, funds clinical as well as basic scientific research, enhances efforts to develop safer and more effective therapies, and serves as an advocate for children disabled by this disease.

Children's Brain Tumor Foundation
274 Madison Avenue, Suite 1301
New York, NY 10016
(212) 448-9494
Toll-Free Patient Support Line: 868.228.HOPE (4673)
FAX: (212) 448-1022
The Children's Brain Tumor Foundation (CBTF) raises funds for basic scientific research into the causes of, and improved treatments for, pediatric brain and spinal cord tumors. CBTF also provides support to patients and their families through the Parent-to-Parent Network, educational teleconferences, telephone support groups, etc. A newsletter, The Challenge, is published twice a year and CBTF's book, A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors, is available at no cost to families in English and Spanish.

Boston Neurosurgical Foundation - This Boston Neurosurgical Foundation site contains information about the neurosurgical team which serves Brigham and Women's Hospital, Children's Hospital and the Dana-Farber Cancer Institute and teaches for Harvard Medical School.

Boston University Medical Center - Alternative therapy utilizes treatments, which depend upon biopharmaceutical, immune enhancement, metabolic, nutritional, and herbal medicine, that are believed to ultimately cure the whole body.

AOL Chat Room:
Support and information for braintumor survivors and their friends and loved ones takes many forms via the wonders of the internet. America On Line offers one of the "live" opportunities via a chat room. "Braintumor" chats are scheduled nightly at 10 PM Eastern Time and can accommodate up to 23 members at one time.
Serving the needs of the attendees as they occur, these chats include serious discussions, sharing, soul searching and even fun. In short, a way to connect with others who share a common experience. One of our major support activities is when new people come in, scared, confused and lacking a lot of positive information. That and the continued support of our regulars and those who come sporadically makes this real-time support very worthwhile. When appropriate, we sprinkle the screen with quips, kidding and humor knowing the therapeutic value of laughter and good company. We are celebrating our first full year on line with this chat room which was founded March 20, 1996 by Sam Depino, the spouse of a braintumor survivor, Carol. If you are searching for others to share your braintumor experience with, caretaker or patient, join us by going to "People Connections" and then "chats" followed by "private rooms" and typing in the word "braintumor".

III. Further Information
Comprehensive page about brain surgery for brain tumors in non-technical language that explains the entire process from prognosis to surgery and follow-up treatment.

American Brain Tumor Association literature:
Free publications about specific brain tumors, newsletters, and support groups in both hard copy and online format.

Brain Tumor Information Services
5812 S. Ellis Ave.
Chicago IL 60637
(773) 684-1400
Learn the latest information about brain tumor research by phone.

Brain Tumor Discussion Mailing List:
To subscribe: Send a message to: LISTSERV@MITVMA.MIT.EDU
Leave the subject line blank, and set the first message line to:
subscribe BRAINTMR your_first_name your_last_name

 MIT Braintrust Center for Neurological Disorder Information