Guide For Patients
John W. Henson, M.D.
MGH Brain Tumor Center
Copyright © John W. Henson
astrocytoma = Grade 3 astrocytoma
Glioblastoma multiforme = Grade 4 astrocytoma
Anaplastic oligodendroglioma = Grade 3 oligodendroglioma
Anaplastic oligoastrocytoma = Grade 3 oligoastrocytoma
= Anaplastic mixed glioma
Algorithm for Diagnosis and Treatment of High-grade Gliomas
and oligodendrogliomas are the most common primary tumors
of the adult brain. Both tumors are types of gliomas.
Primary brain tumors arise from cells of the brain itself
rather than traveling, or metastasizing, to the brain
from another location in the body. Gliomas can be slowly
growing (low-grade, grades 1 and 2), or rapidly growing
(high-grade, grades 3 and 4). This material will give
important facts about the diagnosis and treatment of high-grade
gliomas are diagnosed by a biopsy
a brain tumor is detected on a CT or MRI scan, a neurosurgeon
obtains tumor tissue for examination by a neuropathologist
(a biopsy). The neuropathologist then gives the tumor
a name and grade. The exact name and grade of the tumor
dictate treatment, and also give important information
neuropathologists analyze tumor tissue under a microscope,
there are two main questions being asked:
First, what type of brain cell did the tumor arise
from? The answer to this question gives the tumor
a name, for example, astrocytoma.
Second, do the tumor cells show signs of rapid growth?
This involves assigning the tumor a grade, such as
grade 3 or 4 (see below).
two pieces of information are then combined, as in "grade
4 astrocytoma". Once a tumor has been given a name
and a grade, brain tumor specialists can give advice about
treatment choices, prognosis, and provide useful health-care
information to brain tumor patients and their families.
name: what type of brain cell did the tumor arise from?
arise from brain cells called astrocytes. Normal astrocytes
are star-shaped cells that give the brain its shape. Astrocytes
are the most common cell type to become tumors. Oligodendrocytes
are brain cells that provide insulation around the electrically-active
neurons. Tumors of oligodendrocytes are less common than
astrocytomas. Many tumors contain a mixture of astrocytoma
and oligodendroglioma cells. Tumors of other cell types
in the brain are less common. For instance, tumors of
neurons are very rare in adults.
grade: how aggressive does the tumor appear under the
and oligodendrogliomas come in four grades, with grade
1 being the most benign and grade 4 being the most malignant.
The neuropathologist looks at the brain tumor tissue under
the microscope for signs that the tumor is growing rapidly.
Examples of these features include cells undergoing division
(mitosis), the presence of newly-formed blood vessels,
and evidence that the tumor is outgrowing its blood supply
(necrosis). The more features that are present, the higher
the grade assigned to the tumor.
have more than one name in everyday usage. The list on
the following page gives the common names of high-grade
grade 3 and 4 tumors have a tendency to grow rapidly,
treatment must be started as soon after surgery as is
feasible, allowing time for the surgical incision to heal.
Generally, this means that patients should be undergoing
either radiation therapy or chemotherapy within 2 to 4
weeks after surgery. An algorithm that is commonly used
for treatment of high-grade gliomas is presented on the
are three standard types of treatment for patients with
high-grade gliomas: surgery, radiation therapy, and chemotherapy.
In addition to these standard therapies, major centers
such as the MGH Brain Tumor Center may offer experimental
therapies for high-grade gliomas are helpful, at present
these treatments cannot cure the tumors. The two major
reasons for this are that tumor cells infiltrate into
surrounding brain and thus cannot be
removed by the surgeon, and most glioma cells are at least
partially resistant to radiation and chemotherapy.
goals of treatment are, therefore:
to remove as many tumor cells as possible (with surgery)
to kill as many as possible of the cells left behind
(with radiation and chemotherapy)
to put remaining tumor cells into a nondividing, sleeping
state for as long as possible (with radiation and
glioma cells almost always start to grow again. Patients
receive aggressive treatment in order to delay this regrowth
as long as possible. Regrowth does not necessarily imply
loss of control of the tumor, but it does mean that a
new series of treatments should be considered because
the tumor is becoming more aggressive.
first step in therapy is maximal feasible removal of tumor
tissue. Surgeons believe that patients with smaller amounts
of tumor when they start other treatments will have a
better prognosis. Also, radiation therapy is more easily
tolerated when the pressure from the tumor can be reduced.
is great variability in the amount of tumor that can be
safely removed from the brain of a patient. The variability
is based mainly on the location of the tumor. For instance,
tumors in some brain areas can be removed with very low
risk, while in other brain areas surgery is too risky
to contemplate. The decision about the benefit and risk
of surgical removal is one that experienced brain tumor
neurosurgeons make every day. The underlying principle
is that the surgery should not worsen the patients
condition. The goal is for the patient to be the same
or better after recovering from brain tumor removal. When
a tumor is located in a sensitive area of the brain, a
biopsy is performed with a small needle, thereby avoiding
further damage to brain function.
modern neuro-imaging techniques such as MRI scans, it
is possible for doctors to have a high level of confidence
that a brain tumor is present prior to biopsy. In that
case, it is safe to perform a major surgical resection
at the same time as obtaining tumor tissue for the pathologist
to examine. In some cases, however, it is necessary to
perform a needle biopsy first, and later proceed to a
preliminary diagnosis ("frozen section diagnosis")
is made by the neuropathologist during the surgery in
order to help the neurosurgeon know what type of tumor
is present. The patient and their family are informed
of this preliminary diagnosis immediately after surgery.
However, further recommendations about treatment are not
made until the final pathology report is available. The
final report requires a minimum of 2 working days after
surgery. In difficult cases, the final report can take
a week. It is not uncommon for small, but important, changes
to be made in the diagnosis once all of the biopsy sections
have been examined.
MRI scan is usually obtained within 3 days after tumor
removal. This "post-op" MRI serves as a baseline
for future comparison.
therapy is an important part of the treatment of high-grade
gliomas. In standard therapy situations, patients begin
radiation treatments within 2 to 4 weeks after tumor resection.
A physician who supervises radiation treatments is called
a radiation oncologist.
a "simulation" session in which the radiation
oncologist plans the shape of the radiation beam as well
as dose, treatments are given daily, Monday through Friday,
for 4 to 6 weeks. Each treatment takes only a few minutes.
During radiation, patients are seen weekly by the radiation
oncologist, and a nurse is available for questions every
day. Most patients feel better during radiation therapy
if they are taking a small dose of a steroid which reduces
brain swelling, called Decadron (also called dexamethasone).
are usually no immediate side effects during each treatment.
As the treatment progresses, hair loss will occur over
the area where the radiation beam passes into the tumor.
Most patients experience some fatigue by the second or
third week. For many patients, a 30 minute nap is helpful
every afternoon. There are a number of long term side
effects from radiation therapy, ranging from those that
are a minor nuisance to one that can produce major health
problems. Fortunately, serious side effects are rare.
The potential risks of radiation therapy are outweighed
by the known risk of not treating the tumor. The radiation
oncologist will describe these risks prior to starting
MRI is usually obtained about 2 to 4 weeks after the end
of radiation therapy in order to judge the effect of treatment.
Most of the time this scan will show no change from the
post-operative MRI, which is good. Some shrinkage is even
better. Growth during radiation therapy is an unwanted
sign of an aggressive tumor.
is helpful in controlling the growth of high-grade gliomas.
Several different types of chemotherapy drugs are available.
A neuro-oncologist is skilled at recommending these treatments.
Whereas for most tumors radiation is given prior to consideration
of chemotherapy, chemotherapy is often administered prior
to radiation therapy for patients with anaplastic oligodendrogliomas.
for glioblastoma multiforme raises an important question
as to timing. Although chemotherapy is beneficial, it
is not known whether the timing of administration is important.
Many centers in the United States now save chemotherapy
until there is evidence that the tumor is growing after
radiation therapy. This may mean that months or even years
may elapse between radiation and chemotherapy. Other specialists
prefer to give chemotherapy immediately after radiation
therapy and to give different chemotherapy when the tumor
starts to grow again. This decision has to made on a patient-by-patient
addition to standard chemotherapy, there are studies of
new drugs which are conducted in major research centers.
It is usually good to enter a research study if eligible,
both for reasons of personal benefit and for the benefit
of others in the future. Neuro-oncologists will provide
information about clinical trials.
possible side effects of chemotherapy will be discussed
before beginning treatment. Today, chemotherapy is much
less toxic than even a few years ago. Although chemotherapy
is targeted against dividing tumor cells, there are normal
cells in the body which are dividing. These normal cells
can also be temporarily affected by chemotherapy and may
lead to side effects. Specifically, the cells which can
be affected are the cells in the bone marrow and the cells
which line the gastrointestinal tract. The cells in the
bone marrow form the blood cells that are circulating
in the body. These cells include white blood cells which
fight infection, red blood cells which carry oxygen, and
platelets which prevent bleeding.
other types of cells which may be affected temporarily
or permanently are the female egg cells and those cells
which produce sperm in the man. In men, chemotherapy can
cause sterility, and therefore may make men unable to
father a child. Men should discuss this with the doctor
before starting chemotherapy.
of child-bearing years need to use a reliable birth control
method for the entire time, including the rest periods,
when receiving chemotherapy. Men should use a condom when
having sexual relations within 3 days of getting chemotherapy
to protect their spouses from exposure to the drug. The
effects of many chemotherapy drugs can be harmful to the
growth and development of a fetus, therefore it is crucial
to not become pregnant or father a child while receiving
receiving chemotherapy, and for 3 days after, it is important
that careful attention be paid to hand washing after urination.
Since many chemotherapy drugs are removed from the body
by the urine, careful hand washing will prevent family
members from being exposed to the chemotherapy. If family
members help with personal care of the patient, they should
wear rubber gloves when handling urine or vomitus. Clothing
soiled with urine, vomit, or feces should be washed separately
in hot soapy water.
treatment is completed
the recommended treatments have been completed, an observation
phase is entered. In the observation period, visits to
the neuro-oncologist occur every 2 to 4 months. At these
visits there is a review of symptoms, medications, physical
condition, and usually an MRI or CT is obtained.
prognosis is different for each of the tumors discussed
in this booklet. The specialists will discuss prognosis
Advice for Brain Tumor Patients
the hospital after surgery
patients recover very quickly after surgery on their brain
tumor. The majority are able to leave the hospital within
a few days. Some patients go directly home, whereas others
benefit from inpatient stay in a rehabilitation hospital
to optimize physical function and to gain strength prior
to going home.
the last page, there is a check list to complete before
leaving the hospital. It is important to meet the doctors
who will be part of the team of brain tumor specialists.
There are three kinds of brain tumor specialists:
it is not possible to see all three specialists in the
hospital, in which case their names, telephone numbers,
and an appointment date will be provided prior to discharge.
Also plan to see a primary care doctor soon after discharge.
This doctor will be an important resource for general
medical problems, should they arise. Stitches are usually
removed 7 - 14 days after surgery. The neurosurgeon will
provide specific instructions about sutures.
permanent notes in a notebook
will be many discussions with doctors and nurses about
symptoms, test results, treatments, and medications. It
is helpful to keep careful notes and dates in a permanent
book like a college notebook or a diary.
is important to identify and keep in touch with a primary
care doctor of family physician. Remember to ask each
specialist to send copies of all letters and notes to
the primary care doctor. The primary care doctor should
be contacted for many issues that will come up with general
health issues and insurance matters. For questions about
surgery, radiation, and chemotherapy, and medications
for the tumor, the specialists should be contacted by
the primary care doctor or by the patient and family.
to call the specialist
should call the specialist in the following situations:
After a seizure (see below).
Severe headache or abrupt worsening of existing neurological
Swelling of the ankles and legs, particularly if the
swelling is worse in one leg than in the other. This
may indicate the presence of a blood clot in the large
veins of the legs (called deep venous thrombosis,
or DVT). The risk of these blood clots is quite high
in patients with brain tumors. DVTs are dangerous
because they can break off and travel to the lungs.
Signs of infection-fever, chills, pain on urinating,
unusual headache, stiff neck, sore throat, or severe
Signs of possible bleeding-unusual bruising, severe
headache, unusual abdominal pain, bright red blood
from the nose or rectum.
Severe nausea and vomiting.
A skin rash.
are some of the situations in which a doctor needs to
be contacted. Sometimes it is hard to know whether to
call the doctor about a certain problem. If unsure, it
is safest to call. Telephone numbers of the doctor and
a number at which the doctor on call can be reached after
hours or on weekends should be kept available.
may occur in patients with brain tumors. Seizures can
have many different manifestations, but common types are
twitching of the face, arm or leg without complete loss
of consciousness, and total body shaking with complete
loss of consciousness.
seizures are brief and self-limited. If a seizure lasts
for 2 minutes or less and the patient returns to normal
quickly, make a telephone call to the neuro-oncologist
at the Brain Tumor Center (617-724-8770) for instructions
(for example, to check the blood level of a seizure medication).
If the seizure lasts for more than 3 minutes or if a second
seizure occurs, it is usually necessary to call for medical
help by dialing 911. Have the doctor at the Emergency
Room call the Brain Tumor Center for advice.
patients with seizures, the following activities should
be discussed with a neuro-oncologist: driving, operating
heavy equipment, swimming, any potentially dangerous activity.
the event of a seizure, four things are important:
do not put anything in the patients mouth
protect the patient from sharp objects or dangerous
situations during the seizure
if vomiting occurs, turn the patient on their side
to minimize the risk of aspiration
remain calm and call for help. Patients do not suffocate
help at home
are some important things to do at home. These include:
Keep a positive mental attitude.
Take medications faithfully and as prescribed. Pharmacies
sell pill organizers which can help as a memory aid.
(see next page)
help at home (continued)
Keep a written, up-to-date list of medications for
review at home or at the doctors office.
Eat a healthy diet-including plenty of fresh fruits,
fruit juices and vegetables to prevent constipation.
Take 1 multivitamin with iron each day.
Get some form of exercise-- even a little is better
than none. However, avoid exhaustion.
Avoid alcohol. Some specialists allow patients to
take small amounts of alcohol on occasion, but since
alcohol impairs brain function and can worsen the
side-effects of medications, the safest policy is
to stay away from drinking altogether.
Be alert to signs of infection or bleeding.
admission to the MGH
surgery, if it becomes necessary to be admitted to the
MGH for treatment or for a complication, patients are
usually admitted to the Neuro-Oncology Service. This inpatient
service is under the leadership of the Brain Tumor Center
neuro-oncologists (the "attending"), who is
assisted by a neuro-oncology "fellow", neurology
residents, and specialist nurses. Physical and occupational
therapists usually help with exercises. A case manager
helps to make plans for discharge to home, rehabilitation,
or other location.
attending neuro-oncologist working on the inpatient service
upon admission may not be the patients primary neuro-oncologist,
since the hospital attendings rotate at the beginning
of each month. However, all major decisions will be made
in conjunction with the primary neuro-oncologists
advice. The primary neuro-oncologist will make frequent
visits to check on the overall progress during the hospitalization.
MGH Brain Tumor Center has a training program in which
new brain tumor specialists are studying. These "fellows"
are fully-trained physicians who are specialists in neurology,
neurosurgery, or medical oncology, and who are taking
advanced education in neuro-oncology. The fellows will
be helpful with all aspects of treatment and follow-up.
about brain tumors is easily available from home on the
world wide web. Here are some useful web sites to visit:
Brain Tumor Center Home Page:
Brain Tumor Association:
Name of the doctor to contact in case of an urgent
question. (Suggestions about when to call a specialist
are presented above).
List of medications, and prescriptions.
Ask about driving.
Know what to do in case of a seizure (see above).
Plan to see a primary care doctor in the next two