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While medulloblastoma is rare, it is the most common pediatric malignant (cancerous) brain tumor. Approximately 20% of childhood brain tumors are medulloblastomas. According to the American Cancer Society, about 500 children are diagnosed with medulloblastoma each year in the United States. There are four known subtypes of childhood medulloblastoma. The exact subtype can impact a patient’s treatment plan in some situations.
In adults, medulloblastoma represents only 1% of all malignant brain tumors. It typically affects younger adults (between 20 and 40 years of age). Only about 200 adults are diagnosed with medulloblastoma each year in the United States. Doctors have identified three subtypes of adult medulloblastoma. As with childhood medulloblastoma, different subtypes may call for different treatment plans.
Medulloblastomas start in the cerebellum, in the region of the brain at the base of the skull called the posterior fossa. This is the part of the brain that controls balance and other complex motor and cognitive functions. While medulloblastomas often grow quickly and can spread to other parts of the nervous system and the body, especially the bones or bone marrow, they usually respond well to treatment.
Medulloblastoma risk factors
Anything that increases the chance of developing medulloblastoma is a risk factor. Although the cause of medulloblastoma is not known, certain things may increase the risk.
- Age: Most medulloblastoma cases are diagnosed before age 16, and usually between the ages of 3 and 8. In adults, it is rarely seen after the age of 40.
- Gender: Medulloblastoma is more common in boys than girls. In adults, it is also more common in men than in women.
- Genetic conditions: People with cancer predisposition syndromes like Li-Fraumeni syndrome, Turcot syndrome and Nevoid basal cell carcinoma syndrome (Gorlin syndrome) are more likely to develop medulloblastoma. See our hereditary cancer syndromes page for more information.
In rare cases, medulloblastoma can be passed down from one generation to the next. Genetic counseling may be right for you. Visit our genetic testing page to learn more.
The symptoms of medulloblastoma vary from patient to patient. Symptoms of medulloblastoma include:
- Headaches, which may be worse in the morning and get better during the day
- Nausea or vomiting in the morning
- Problems with motor skills, such as clumsiness or poor handwriting
- Tilting the head to one side
- Walking difficulty and balance problems
Sometimes medulloblastoma can spread to other parts of the brain and the spinal cord. If this happens, the symptoms may include:
- Back pain
- Difficulty walking
- Inability to control bladder and bowel functions
These symptoms can be caused by something other than medulloblastoma. However, it is important to discuss any symptoms with your doctor, since they may signal other health problems.
If you or your child have symptoms that may signal medulloblastoma, your doctor will perform an exam and ask questions about overall health. The doctor also may do a neurological exam to test reflexes, muscle strength, vision and other functions of the brain and spine.
If anything appears abnormal, the doctor may refer you to a neurologist, neurosurgeon or neuro-oncologist, doctors who specialize in the treatment of nervous system diseases.
One or more of the following diagnostic tests may be used to find out if you or your child have medulloblastoma and if it has spread. These tests also may be used to find out if treatment is working.
Imaging tests, including:
- CT (computed tomography) scans
- MRI (magnetic resonance imaging) of the brain and spine
- PET (positive emission tomography) scan
Surgery: If an MRI or CT of the brain shows a tumor in the lower part of the back of the brain, medulloblastoma may be a possibility. In an operation called a craniotomy, all or part of the brain tumor is removed. This is needed to confirm the diagnosis and is the first step of treatment. If tumor removal is not possible, a biopsy may be needed. In a biopsy, a small sample is removed from the tumor and looked at with a microscope to confirm the diagnosis.
In addition to tumor removal, additional tests are required to evaluate how much the disease has spread from its original site and decide the best course of treatment. These tests include:
- A brain MRI obtained after tumor removal
- A whole spine MRI
- A spinal tap, or lumbar puncture). During this procedure, a small amount of cerebrospinal fluid (clear liquid in and around the brain and spine) is removed with a needle from the spinal canal. It is then examined with a microscope to determine if tumor cells have spread into the cerebrospinal fluid.
- A CT or a PET scan of the body may be needed in some cases to determine if the tumor has spread outside of the nervous system
Medulloblastoma second opinions
The pediatric cancer experts at Children’s Cancer Hospital and the adult cancer experts at the Anne C. Brooks Brain and Spine Center welcome the opportunity to provide second opinions for medulloblastoma.
If you would like to get a second opinion, call 844-566-8470 to make an appointment or request an appointment online.
After a medulloblastoma has been surgically removed, it will be classified in one of two categories.
Standard risk medulloblastoma:
- Less than 1.5 centimeters of tumor is left after surgery
- Cancer has not spread to another part of the nervous system or the body
- Patient is at least three years old or older
- More than 1.5 centimeters of tumor is left after surgery or cancer has spread to another part of the nervous system or the body
- Patient is younger than three years old
- Patient has anaplastic/large cell variant of medulloblastoma
Research has identified at least four distinct subtypes of medulloblastoma in children. In adults, preliminary research has identified three main subtypes of medulloblastoma, and research is ongoing to better define the best treatment for each.
At MD Anderson, medulloblastoma treatment is carefully designed by a team of highly specialized experts. Our world-renowned neurosurgeons, neuropathologists, neuro-oncologists, neuroradiologists and radiation oncologists work together to develop a customized care plan centered on each patient’s specific treatment needs. They take a team approach to deliver the most advanced therapies with the fewest possible short- and long-term side effects, keeping a constant eye on the patient’s quality of life.
Each patient is also cared for by a specially trained staff of nurses, therapists and other care professionals. For pediatric patients, this team remains with your child from diagnosis through follow-up, providing consistency and peace of mind.
Leading Advancements in Treatment
Advanced technologies and less-invasive treatment options, such as proton therapy, BrainSuite (intraoperative MRI) and new targeted therapies provide the best hope for successful treatment with the least impact on physical and mental function.
We are also pioneering the use of immunotherapy, which unleashes the body's own immune system against disease, as a treatment for recurrent medulloblastoma. In addition, we conduct a wide range of clinical trails, including trials targeted therapies and minimally invasive procedures that deliver medications directly to the tumor.
Thanks to advanced treatments, more than two-thirds of children with medulloblastoma can be treated successfully. Many adults are also successfully treated.
However when the disease recurs, treatment can be challenging and have less chance of success. Teams with both the Children’s Cancer Hospital and Brain and Spine Center specialize in treating relapsed brain tumors, including medulloblastoma. This focused, multidisciplinary approach is critical achieving the best possible results.
Our medulloblastoma treatments
Medulloblastoma treatment is customized based on several factors, including, the patient’s age and health, the size and location of the tumor, and whether the cancer has spread to other parts of the nervous system or the body. One or more of the following therapies may be recommended to treat the cancer or help relieve symptoms.
Medulloblastoma treatment almost always includes surgery to remove as much of the tumor as possible as safely as possible to minimize damaging the surrounding brain tissue. Studies have shown that if doctors remove more of the tumor, the chances for successful treatment and improved survival are better.
In addition, surgery may be required to treat a condition called hydrocephalus. This occurs when the tumor blocks the cerebral spinal fluid (CSF) surrounding the brain and spine. In this situation, doctors may perform a procedure to divert the CSF.
Like all surgeries, brain tumor surgery is most successful when performed by a specialist with a great deal of experience in the particular procedure. This is especially true with brain tumors, because it is crucial to remove as much of the tumor as possible while leaving intact as much brain function as possible.
Neurosurgeons with the Children’s Cancer hospital and Brain and Spine center are among the most skilled and recognized in the world. They perform more surgeries on brain tumor patients than any hospital in the nation using the least-invasive and most-advanced techniques.
Chemotherapy for medulloblastoma
After surgery, most children receive chemotherapy to destroy any remaining cancer cells. Children’s Cancer Hospital offers the most up-to-date and advanced chemotherapy options for pediatric brain tumors.
Some adults with medulloblastoma may receive chemotherapy in addition to radiotherapy to destroy any remaining cancer cells after surgery. This is an important decision, and it is critical to balance factors such as age, the amount of tumor left after surgery, and whether the cancer has spread to other parts of the nervous system or the body.
Radiation therapy for medulloblastoma
Radiation therapy (also called radiotherapy) uses high-energy beams to destroy cancer cells.
All adults with medulloblastoma receive radiation therapy to the brain and the spine (“craniospinal radiation”) after surgery to stop or slow the growth of any residual tumor that cannot be removed surgically and any tumor cells that may have spread into the cerebrospinal fluid.
Depending on their age and condition, some children receive radiation therapy, as well.
New radiation therapy techniques and remarkable skill allow MD Anderson doctors to target brain tumors more precisely, delivering the maximum amount of radiation with the least damage to healthy cells.
MD Anderson uses the most advanced radiation treatment methods, including:
- Proton therapy, which delivers high radiation doses directly to the brain tumor site, minimizing damage to nearby healthy tissue. The Proton Therapy Center at MD Anderson is one of the largest and most advanced centers in the world. It’s the only proton therapy facility in the country located within a comprehensive cancer center. This means this cutting-edge therapy is backed by all the expertise and compassionate care for which MD Anderson is known. which can lessen exiting radiation dose to certain organs. Read more about proton therapy.
- Focused conformal radiation therapy, which is aimed directly at the tumor and the surrounding area.
- Intensity-modulated radiotherapy (IMRT), which shapes the radiation beam to the brain tumor and lessens exposure to the rest of the brain or organs
Targeted therapies for medulloblastoma
Targeted therapies are specially designed to treat each cancer’s specific genetic/molecular profile to help the body fight the disease. Many of the doctors who treat brain tumors at Children’s Cancer Hospital and the Brain and Spine Center are dedicated researchers who have pioneered and actively lead national and international clinical trials to treat brain tumors, including medulloblastoma, with novel targeted agents.
Our experts are collaborating with experts from around the world to better understand the biology and molecular subtypes of medulloblastoma, including relapsed tumors, to design personalized therapies.
Why choose MD Anderson for medulloblastoma care?
Medulloblastoma tumors may look similar under the microscope, but research shows there are four subtypes of childhood medulloblastoma. The Children’s Cancer Hospital has a team of leading neuro-oncologists, neurosurgeons, radiation oncologists, neuropathologists and neuroscientists that work together to develop treatment plans based on each patient’s tumor. This increases the chances for successful treatment. These plans may include access to clinical trials for newly diagnosed and recurrent medulloblastoma.
Since the Children's Cancer Hospital is designed just for children, we provide a full range of services and amenities that help make the child and family's experience as comfortable as possible, including a school, art programming, day trips and summer camps. We go beyond medical care to deliver a comprehensive experience that treats the whole child.
Adult medulloblastoma care
In adults, medulloblastoma is rare, but it’s not rare to our multidisciplinary team at the Anne C. Brooks Brain and Spine Center.
Our physicians, including neuro-oncologists, neurosurgeons, radiation oncologists, neuropsychologists, neuropathologists and neuroradiologists, have the experience and expertise to treat patients who develop medulloblastoma later in life. They work together to create treatment plans for each adult medulloblastoma patient and to develop new experimental therapies for the disease.
Loving yourself allows you to enjoy the rollercoaster of life you’ve been given
My first thought after being diagnosed with a brain tumor at age 26 was fear. Would I die? Would the things I worked for no longer be possible? How was I going to handle brain tumor surgery and cancer treatment when I can’t even handle flu shots? Even what I was going to look like with no hair scared me.
I was diagnosed with adult medulloblastoma one month before my graduation from law school. Medulloblastoma is a type of brain tumor that’s common in children, but rare in adults. I wasn’t used to not knowing what was going to happen next. My life had always been a steady progression: college, then law school – and it was supposed to continue to landing my first job and starting a family. I was grieving for a life I felt I was losing.
Many of us who have been diagnosed with cancer understand that it feels like losing a loved one. You go through the five stages of grief. I had to let myself grieve and let others support me in my anger and sadness. That’s the only way to get through it.
Support during brain cancer treatment
After surgery to remove the brain tumor, I went through radiation and chemotherapy. Treatment was rough. It made me very sick and nauseous. As independent as I claim to be, I had to lean on my family and friends.
Their love and support were the only things that got me into the car and to the hospital or radiation center when staying home seemed preferable. Only with their encouragement was I able to finish my law school exams, graduate as a lawyer and pass the bar exam while going through radiation and chemotherapy. They gave me the support I needed to become the assistant district attorney I am today.
From visiting me at the ER while I studied for the bar exam, to making food that I would actually eat when chemotherapy made everything taste disgusting, all of the loving gestures from my friends and family made a huge difference.
You’d be surprised at how much people (even people you never expected!) are willing to help when you ask. The human spirit is remarkable – we can do what we never thought we could with a little resilience and some help.
Being a young adult with brain cancer
Being diagnosed with cancer at any age is terrible. When you’re a young adult starting a career or starting a family, cancer can seem like an obstacle you’ll never overcome. It felt like my life was over.
Thankfully, I found some wonderful resources and learned I didn’t have to go through this journey alone. I joined Cancer180, a group at MD Anderson that connects young adult cancer patients in their 20s and 30s. I found that talking with people who understood what I was going through really helped the healing process.
As I tell other young adults with a cancer diagnosis, live day-to-day, and keep striving to achieve your dreams. You don’t know what you can do until you try. You’ll surprise yourself with how strong you can be.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.