The MIT Braintrust Center for Neurological Disorder Information
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
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
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
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.
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
(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;
Brain Tumor Foundation for Children, Inc.
1835 Savoy Drive
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
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
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
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
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
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
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