Brain tumors do not discriminate. They can affect us ALL! Our goal is to raise awareness and provide much needed assistance to patients and caregivers.
We cannot do it alone! We need your help!
Music by Nichole Nordeman. Video created by Sarah Trask.
An estimated 700,000 Americans are living with a tumor
An estimated 87,240 people will receive a primary brain tumor diagnosis in 2020
The average survival rate for all malignant brain tumor patients is only 36%
An estimated 18,020 people will die from malignant brain tumors (brain cancer) in 2020
Brain tumors are the most common solid cancer in persons age 0-14 years, as well as when expanded to ages 0-19 years.
Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-14 years, as well when expanded to ages 0-19 years, surpassing leukemia.
National Brain Tumor Society
More than any other cancer, brain tumors can have lasting and life-altering physical, cognitive, and psychological impacts on a patient’s life.
National Brain Tumor Society
Brain tumors are the third leading cause of cancer-related death overall in this age (15-39) group
Brain tumors represent the highest per-patient initial cost of care for any cancer group, with an annualized mean net cost of care approaching $150,000; and the highest annualized mean net costs for last-year-of-life care, relative to other cancers, at $135,000 to $210,000 (depending on age and gender) per patient
Despite the number of brain tumors, and their devastating prognosis, there are only five FDA approved drugs – and one device – to treat brain tumors. For many tumor types, surgery and radiation remain the standard of care.
There has never been a drug developed and approved specifically for malignant pediatric brain tumors.
The five approved drugs for brain tumors have provided only incremental improvements to patient survival, and mortality rates remain little changed over the past 30 years .
A BRAIN TUMOR is an abnormal growth of tissue in the brain or central spine that can disrupt proper brain function. Doctors refer to a tumor based on where the tumor cells originated, and whether they are cancerous (malignant) or not (benign).
Brain tumors can cause both physical and mental symptoms. The symptoms can differ depending on the type, location, and stage of the tumor.
Some symptoms can be quite general. These include headaches, vision problems, and mood changes. Seizures and personality changes can also signal the presence of a brain tumor.
If a person notices any early symptoms of a brain tumor, they should speak to their doctor for a thorough diagnosis. Early diagnosis and treatment can lead to better outcomes.
Most people diagnosed with a primary brain tumor do not have any known risk factors. However, certain risk factors and genetic conditions have been shown to increase a person’s chances of developing one, including:
The average survival rate for all malignant brain tumor patients is only 36%
A primary malignant brain tumor is a rare type of cancer accounting for only about 1.4% of all new cancer cases in the U.S. The most common brain tumors are known as secondary tumors, meaning they have metastasized, or spread, to the brain from other parts of the body such as the lungs, breasts, colon or prostate.
National Foundation For Cancer Research
On May 9, 2016, the World Health Organization (WHO) published an official reclassification of Tumor Types of the Central Nervous System, which has moved the greater neuro-oncology field toward a more precise and accurate system of brain tumor classification. Based on information from expert neuropathologists and neuro-oncologists, the result of the updated WHO classifications, which integrate molecular information with histology, is that doctors will be better able to more accurately diagnose, make prognoses, plan treatment, and predict therapeutic response for patients. A more precise diagnosis and treatment plan is a win for patients.
Types of Brain and Spinal Cord Tumors in Children
How serious a brain or spinal cord tumor is in a child depends on its grade. The grade (I to IV) is based on what the tumor cells look like under a microscope. Grade I is the least serious and grade IV is the most serious. Low-grade tumors (I or II) tend to grow slowly. High-grade tumors (III or IV) are malignant, with fast growth and spread into normal brain tissue.
The most common types of brain and spinal cord tumors in children are medulloblastomas and gliomas, which include:
Meningiomas are the most common kind of brain tumor — accounting for about 30 percent of all brain tumors — and most are treatable. In fact, the majority of these tumors can be removed surgically, and many do not return.
How do meningiomas differ from other brain tumors?
Meningiomas arise from the layers of membrane that cover the brain and spinal cord, not from the brain tissue itself. Some 90 percent of meningiomas are benign — that is, they are not likely to spread throughout the body — and they tend to grow slowly over months or even years.
However, meningiomas can become quite large, and crowd the brain and other structures inside the skull.
What is GBM?
Glioblastoma (GBM) is the deadliest type of brain cancer, accounting for 45% of all malignant brain tumors. In the United States alone, over 12,000 new cases per year are detected. The disease has long been universally fatal and without cure, with a median survival rate after diagnosis of one to two years and killing 95% of patients within five years.
What is a MEDULLOBLASTOMA?
A medulloblastoma is a malignant pediatric brain tumor that arises in the cerebellum, a part of the brain located at the base of the skull.
WHAT YOU NEED TO KNOW
What is DIPG?
Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
DIPG affects children almost exclusively. Approximately 200-400 children in the United States are diagnosed with DIPG each year. These children are typically between the ages of 4 and 11. DIPG accounts for roughly 10-15% of all brain tumors in children.
DIPG is an aggressive tumor that interferes with all bodily functions, depriving a child of the ability to move, to communicate, and even to eat and drink.
As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death.
YEARS OF POTENTIAL LIVE LOST
Malignant brain tumors cause an average of 20 Years of Potential Life Lost (YPLL) for individuals diagnosed as adults, which exceeds most common cancers. Among children ages 0-19 years, brain tumors represent the largest cause of YPLL due to cancer, with a mean YPLL of approximately 80 years.
How Many People Survive 5 Years or More after Being Diagnosed with Brain and Other Nervous System Cancer?
5-Year Relative Survival - 32.6%
Relative survival statistics compare the survival of patients diagnosed with cancer with the survival of people in the general population who are the same age, race, and sex and who have not been diagnosed with cancer. Because survival statistics are based on large groups of people, they cannot be used to predict exactly what will happen to an individual patient. No two patients are entirely alike, and treatment and responses to treatment can vary greatly.
The World Health Organization (WHO) has developed a grading system to indicate a tumor's malignancy or benignity based on its histological features under a microscope.
Low Grade (WHO Grade I and WHO Grade II) and High Grade (WHO III and WHO Grade IV)
Treatments for different brain tumors will depend on symptoms, location and biological aggressiveness of the tumor, the extent of possible surgical resection, and the tumor tissue pathology characteristics. Always consult with your doctor or neuro-surgeon concerning the most appropriate treatment options for you.
Through the end of the month, we will share a general overview of most current treatment options available for brain tumor patients.
Most brain tumor patients’ treatment begins – if possible – with surgery to remove as much of the tumor as possible without damaging critical healthy tissue. Thankfully, neurosurgery and imaging technology, tools, and techniques have improved – and continue to do so – over the past decade, and many new advances are available to help surgeons at top brain tumor centers remove brain tumors with more precision and completeness. Patients should discuss and understand their surgery and the different surgical options now available for patients with their medical team.
Therapy Radiation therapy (also called “radiotherapy,” “irradiation,” or simply “radiation”) is another standard treatment that many brain tumor patients will receive. Radiation therapy involves the use of x-rays, gamma rays, neutrons, protons, and other sources to kill cancer cells and shrink tumors by damaging their DNA. Radiation may come from a machine outside the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy or brachytherapy). Like surgery, there are now many newer and emerging radiation technology, tools, and techniques, including radiosurgery (also called stereotactic radiosurgery) and proton beam therapy.
Chemotherapy (often abbreviated as “chemo”) refers to chemical compounds – or drugs – that kill fast-dividing cells, like cancer cells. It is prescribed when surgery and/or radiation are not enough to remove a tumor and is used most often for treatment of malignant tumors. Chemotherapy can be provided to the patient in three forms:
A number of different chemotherapies are approved for use in brain tumors:
Targeted Therapy (Precision Medicine)
A type of treatment that uses drugs targeting the specific changes and molecular alterations in tumors that drive their growth. Some targeted therapies block the action of certain enzymes, proteins, or other molecules involved in the proliferation and spread of cancer cells and often require that the tumor is tested to check whether it contains a target for which there is an available drug. Targeted therapies may also be designed to home in on and attack tumor cells specifically, causing less harm to normal cells. For brain tumors, there have been two targeted treatments approved and sometimes used in treatment:
A medical device (a wearable cap connected to a battery pack in a backpack) called “Optune” (NovoTTF-100A Device) that is applied with electrodes placed on a patient’s scalp and delivers alternating electric fields to disrupt tumor growth. This treatment is approved for use in glioblastoma patients.
Many clinical trials evaluating new potential drugs to treat brain tumors are ongoing. Clinical trials – though the treatments are still “investigational” (or experimental) and not yet FDA approved – can sometimes be the best avenue for patients with difficult to treat brain tumors to access the most cutting-edge emerging treatments and improve the opportunities of finding a new treatment that may be effective for them (and for other future patients).
Patients and caregivers can search for clinical trials using the NBTS Clinical Trial Finder.
Coping and Support
A diagnosis of a brain tumor can be overwhelming and frightening. It can make you feel like you have little control over your health. But you can take steps to cope with the shock and grief that may come after your diagnosis. Consider trying to:
Ask your doctor about support groups in your area. Or check your phone book, library or a cancer organization, such as the National Cancer Institute or the American Cancer Society.
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