|
When Your Child Is Diagnosed
Talking With Your Child's Doctor
How Can My Child Get the Best Treatment?
After your child's cancer has been diagnosed, a
series of tests will be done to help identify your
child's specific type of cancer. Called staging, this
series of tests is sometimes done during diagnosis.
Staging determines how much cancer is in the body and
where it is located. To stage solid tumors, the doctor
looks at the size of the tumor, the lymph nodes
affected, and where it has spread. To stage leukemia,
the doctor checks the bone marrow, liver, spleen, and
lymph nodes around the sites where the leukemia can
hide. Staging must be done to determine the best
treatment. Many different tests can be used in staging,
such as
x-rays,
MRIs,
CT (or CAT)
scans, and others. See
Common Medical Procedures for a description of the
various tests.
As soon as your child is suspected to have or is
diagnosed with cancer, you will face decisions about who
will treat your child, whom to ask for a second opinion
(if desired or if the diagnosis is not clear), and what
the best treatment is. After your child's staging is
complete, the treatment team develops a plan that
outlines the exact type of treatment, how often your
child will receive treatment, and how long it will last.
 Your
child's doctor and the treatment team will give you a
lot of details about the type of cancer and possible
treatments. Ask your doctor to explain the treatment
choices to you. It is important for you to become a
partner with your treatment team in fighting your
child's cancer. One way for you to be actively involved
is by asking questions. You may find it hard to
concentrate on what the doctor says, remember everything
you want to ask, or remember the answers to your
questions. Here are some tips for talking with those who
treat your child:
- Write your questions in a notebook and take it
to the appointment with you. Record the answers to
your questions and other important information.
- Tape record your conversations with your child's
health care providers.
- Ask a friend or relative to come with you to the
appointment. The friend or relative can help you ask
questions and remember the answers.
| Questions to Ask the Doctor and Treatment
Team When your child's treatment team
gives you information about your child's cancer,
you may not remember everything. That is
natural. It is a lot of information, and your
emotions will get in the way as you try to take
it all in. Use the three techniques listed above
- write, tape record, and ask a friend for help
- to help you retain the information you need to
be an effective partner with your child's
treatment team. Make sure you know the answers
to these questions:
About the diagnosis
- What kind of cancer does my child have?
- What is the stage, or extent, of the
disease?
- Will any more tests be needed? Will they
be painful? How often will they be done?
About treatment choices
- What are the treatment choices? Which do
you recommend for my child? Why?
- Would a
clinical trial
be right for my child? Why?
- Have you treated other children with
this type of cancer? How many?
- What are the chances that the treatment
will work?
- Where is the best place for my child to
receive treatment? Are there specialists -
such as surgeons, radiologists, nurses,
anesthesiologists, and others - trained in
pediatrics?
Can my child have some or all of the
treatment in our home town?
About the treatment
- How long will the treatment last?
- What will be the treatment schedule?
- Whom should we ask about the details of
financial matters?
- Will the treatment disrupt my child's
school schedule?
About side effects
- What possible side effects of the
treatment can occur, both right away and
later?
- What can be done to help if side effects
occur?
About the treatment location
- How long will my child be in the
hospital?
- Can any treatment be done at home? Will
we need any special equipment?
- Does the hospital have a place where I
can stay overnight during my child's
treatment?
About school and other activities
- Is there a
child-life worker
specialist (a professional who is
responsible for making the hospital and
treatment experience less scary for the
child) to plan play therapy, schoolwork, and
other activities?
- When can my child go back to school?
- Are there certain diseases my child
cannot be around? Should I have my child and
his or her siblings immunized against any
diseases?
- Will my child need tutoring?
- Is information available to give to the
school system about my child's needs as he
or she receives treatment?
|
Before your child starts treatment, make sure you
feel comfortable with your choice of the doctor and
hospital to treat your child's cancer.
Who Should Treat My Child?
 It is best
for your child to be treated by a health care provider
who specializes in the diagnosis and treatment of
children's cancers - a pediatric
oncologist.
Once you have chosen a doctor and discussed a
diagnosis and treatment plan, but before treatment has
started, you may want to get a second opinion - that is,
you may want to ask a different doctor to review the
diagnosis and plan. Some insurance companies require a
second opinion; some may pay for it if you ask. A second
opinion may also be obtained during the course of
treatment if it is not working as hoped. Most doctors
support a parent's decision to get a second opinion and
many even suggest you do so. To find specialists to get
a second opinion, you might -
- Ask your child's doctor to suggest a specialist
for a second opinion.
- Get the names of doctors who specialize in
treating childhood cancer from the local medical
society, a nearby hospital, or a medical school. You
can find the telephone numbers for these
organizations in your telephone directory or the
Yellow Pages.
- Contact an NCI Comprehensive Cancer Center for a
second opinion and possible treatment. Considered
"Centers of Excellence," these cancer centers'
programs have been reviewed and selected by NCI.
They offer the most up-todate diagnosis and
treatment of cancer and are devoted to both basic
and clinical research. To obtain information about
the location of the different cancer centers, call
the CIS at 1-800-4-CANCER (1-800-422-6237) or TTY at
1-800-332-8615.
- Contact the Pediatric Oncology Branch, NCI,
located in Bethesda, Maryland, to ask for a second
opinion appointment. They can be reached at
1-877-624-4878.
What Is a Standard Therapy Versus a Clinical
Trial?
Your child's doctor may recommend a
standard therapy or a
clinical trial. Standard therapy is the best treatment
available outside of clinical trials for a specific type
and stage of cancer.
A cancer clinical trial is a research study. In a
clinical trial, a new treatment is used with a group of
patients to find out:
- if it is safe
- if it destroys the cancer
- if it has side effects and how severe they
might be
- if it is better than standard therapy.
These new treatments are first tested in the
laboratory and on animals. If a treatment shows promise
of being better than the standard therapy, it is tested
with patients in a clinical trial.
Most clinical trials are carried out in steps called
phases. Each phase answers different questions about the
treatment. Patients may be eligible for studies in
different phases, depending on their general condition
and the type and stage of their cancer.
-
Phase I studies
test new treatments in humans to determine if the
treatment can be given safely and if it has harmful
side effects. Researchers look for the best dose and
the best way to deliver the treatment. Because less
is known about the possible risks and benefits in
Phase I, these studies usually include only a
limited number of patients who would not be helped
by other treatments.
-
Phase II studies
focus on learning whether the new treatment actually
has an anticancer effect. As in Phase I, only a
small number of people take part because of the
risks and unknowns involved.
-
Phase III studies
compare the results of people receiving the new
treatment with results of people receiving standard
therapy. In most cases, studies move into Phase III
testing only after a treatment shows promise in
Phases I and II. Phase III studies may include
hundreds of people around the country.
-
Phase IV studies
evaluate the side effects of the new treatment -
once it has been approved and is being marketed -
that were not apparent in the Phase III trial.
Thousands of people are involved in a Phase IV
trial.
Clinical trials have played an important role in
producing new and better treatments. About two-thirds of
children with cancer are treated in clinical trials
You and your child's doctor can learn about clinical
trials from PDQ® - NCI's cancer information database.
PDQ® contains:
- descriptions of current clinical trials,
including information about the purpose of the
study, who is eligible for the study, details of the
treatment program, and the names and addresses of
doctors and places conducting the study
You may ask your doctor to obtain information from
PDQ®, or you may call the NCI-supported Cancer
Information Service (CIS) at 1-800-4-CANCER
(1-800-422-6237) or TTY at 1-800-332-8615 to ask for a
PDQ®
search. Read more about
PDQ® on the NCI Web site,
Cancer.gov. To find
out about NCI trials taking place on the main campus of
the National Institutes of Health in Bethesda, Maryland,
you may also call the NCI's Pediatric Oncology Branch at
1-877-624-4878.
Where Should My Child Be Treated?
Once the treatment is planned, you will need to
decide where your child will be treated. Treating
children is different from treating adults. Whenever
possible, it is best for your child to begin treatment
at a hospital or treatment center where many children
have been treated for cancer. Selecting a hospital and
staff specializing in treating childhood cancer will
help your child receive the best available treatment
right from the beginning. To obtain information about
hospitals and treatment centers that specialize in
treating childhood cancer, call the CIS at
1-800-4-CANCER (1-800-422-6237) or TTY at
1-800-332-8615.
|
