{SCA} Many people with brain tumors want to take an active part in making decisions about their medical care.
They want to learn all they can about their disease and their treatment choices.
However, shock and stress after a diagnosis of a brain tumor can make it hard to think of everything to ask the doctor. It often helps to make a list of questions before an appointment.
To help remember what the doctor says, patients may take notes or ask whether they may use a tape recorder. Some also want to have a family member or friend with them when they talk to the doctor – to take part in the discussion, to take notes, or just to listen.
The doctor may refer the patient to a specialist, or the patient may ask for a referral. Specialists who treat brain tumors include neurosurgeons, neurooncologists, medical oncologists, and radiation oncologists.
The patient may be referred to other health care professionals who work together as a team. The medical team may include a nurse, dietitian, mental health counselor, social worker, physical therapist, occupational therapist, and speech therapist.
Children may need tutors to help with schoolwork. (The section on “Rehabilitation” has more information about therapists and tutors.)
Getting a second opinion
Before starting treatment, the patient might want a second opinion about the diagnosis and the treatment plan. Some insurance companies require a second opinion; others may cover a second opinion if the patient or doctor requests it.
There are a number of ways to find a doctor for a second opinion:
* The patient’s doctor may refer the patient to one or more specialists. At cancer centers, several specialists often work together as a team.
* The Cancer Information Service, at 1-800-4-CANCER, can tell callers about nearby treatment centers.
* A person with a brain tumor can request a consultation with a team of specialists in NCI’s Neuro-Oncology Branch of the Warren Grant Magnuson Clinical Center at the National Institutes of Health in Bethesda, Maryland (301-402-6298).
* A local or state medical society, a nearby hospital, or a medical school can usually provide the names of specialists.
* The American Board of Medical Specialties (ABMS) has a list of doctors who have met certain education and training requirements and have passed specialty examinations. The Official ABMS Directory of Board Certified Medical Specialists lists doctors’ names along with their specialty and their educational background. The directory is available in most public libraries.
Preparing for Treatment
The doctor can describe treatment choices and discuss the results expected with each treatment option. The doctor and patient can work together to develop a treatment plan that fits the patient’s needs.
Treatment depends on a number of factors, including the type, location, size, and grade of the tumor. For some types of brain cancer, the doctor also needs to know whether cancer cells were found in the cerebrospinal fluid.
These are some questions a person may want to ask the doctor before treatment begins:
* What type of brain tumor do I have?
* Is it benign or malignant?
* What is the grade of the tumor?
* What are my treatment choices? Which do you recommend for me? Why?
* What are the benefits of each kind of treatment?
* What are the risks and possible side effects of each treatment?
* What is the treatment likely to cost?
* How will treatment affect my normal activities?
* Would a clinical trial (research study) be appropriate for me? Can you help me find one?
People do not need to ask all of their questions or understand all of the answers at one time. They will have other chances to ask the doctor to explain things that are not clear and to ask for more information.
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