Scared? Numb? Confused and overwhelmed?
These feelings are normal if you’ve just been told you have a brain tumor. A lot of doctors have probably given you a ton of information that doesn’t make sense yet. This can be very frightening but please – don’t freak out. You and your family will feel better once you learn more about the different kinds of tumors and their treatment. Many kids like you have survived brain tumor therapy and are considered cured.
First Step – What Type of Tumor Do I Have?
First, you need to know what type of tumor you have, usually diagnosed by a biopsy or tumor resection (removing tissue through surgery). The tumor tissue is then sent to a pathologist who identifies the type of tumor. Some tumors are not biopsied because it would cause too much damage to your brain. The oncologist can often make a diagnosis based on the location and appearance of your tumor on MRI scans even without a biopsy. There are many types of central nervous system tumors (brain and spinal cord). Some are more serious than others and require aggressive therapy. Others, once surgically removed need no further treatment. Brain and other central nervous system tumors are named for the type of cell from which they grow and their location within the brain. Tumors that grow from glial cells (the support cells in your brain) are the most common brain tumors. These include:
- Glioblastoma multiforme
- Choroids plexus tumors.
Meningiomas are tumors of the meninges, the protective layer that surrounds the brain and spinal cord. These are more common in adults and are usually not cancerous, but may cause other problems by creating pressure on the brain. Primitive neuroectodermal tumors (PNET) are caused by some early stem cells found in the brain that don’t mature into functional cells. Some examples of this type of tumor are:
(Note: You might not want to remember the scientific name of your tumor. That’s OK. But you should try to learn the effect your tumor is having on your body and exactly what treatment you will receive.)
All Those Scans…
You have probably already had a CAT (or CT) scan (computerized axial tomography) that puts together a cross-sectional picture of your brain using X-rays. It does not take very long but as you already know, you must lie perfectly still. Often, dye is injected into your veins prior to the scan to help improve the picture. One of the most important tests you have had or will have is an MRI (Magnetic Resonance Imaging). Using a powerful magnet and radio waves, MRI’s scan your head and/or spine to get a very detailed picture. This test takes 1-2 hours. It is very important that you don’t move during the scan. Some teens dislike the MRI machine because they feel claustrophobic; others aren’t bothered by it. Don’t worry if you feel worried or anxious. You can take sedation medicine to help you relax or sleep during your testing.
Beware: an MRI machine is very loud, so you might want to bring headphones.
MRI’s are usually repeated every 3 months during your first year of treatment.
A Few Facts and Figures…
Primary tumors of the central nervous system (CNS) are the most common solid tumors in children and are the second most common childhood cancer. They account for about 10% of all teen cancers. So, you are not alone! Your brain is divided into an upper (supratentorial) and lower (infratentorial) half. Before age 1, most CNS tumors are located in the upper half of the brain. Children between the ages of 1 and 12 will more likely develop a tumor of the lower half of the brain. Following puberty, most tumors again are found in the upper brain. If you want to know more about the specific type and location of your particular tumor, you can go to the National Cancer Institute.
Your treatment plan will probably include some combination of surgery, radiation, and chemotherapy: Surgery is one of the most important tools in the treatment of CNS tumors. The results of surgery often affect your treatment and prognosis for recovery. Surgery is performed for:
- Diagnosis (biopsy or resection)
- Releasing pressure within your brain caused by the tumor (you may be having some pretty nasty headaches)
- Decreasing the amount of tumor cells present
The best case is when the entire tumor can be surgically removed. However, completely removing the tumor is sometimes difficult because tumors grow into surrounding tissues and are often found in places where surgery could cause damage.
Radiation therapy is effective against many CNS tumors. The amount of radiation used depends on the type and location of your tumor, and the ability of the surrounding tissue to tolerate the radiation dose. Some radiation fields (or areas) are very small and localized. Tumors that have spread into surrounding tissue or are known to grow quickly are treated with larger radiation fields.
Chemotherapy for CNS tumors is complicated. The blood brain barrier is a term used to describe tightly formed walls of capillaries in the brain. In addition, a supportive sheath surrounds these capillaries. This combination forms a barrier that limits the passage of drugs into your central nervous system. Combination chemotherapy helps somewhat by combining drugs that can penetrate the blood brain barrier with drugs that have the ability to kill tumor cells. Pretty neat!
Because of the many different types of brain tumors, it is difficult to tell you exactly what your future will be. However, be assured that many new technologies and chemotherapy medications are available today to help cure brain tumors. The road ahead may be a tough one – but you’re tougher. Try to take one step at a time. Learn as much as you can about what’s going on with your body and be a player in your own game. Keep seeing yourself as the winner!