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FOCUSING ON TUMORS Medulloblastoma

Medulloblastoma 2005

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Page 1: Medulloblastoma 2005

F O C U S I N G O N T U M O R S

Medulloblastoma

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A Word About ABTA Founded in 1973, the not-for-profit AmericanBrain Tumor Association has a proud history of funding research, providing patient services,and educating people about brain tumors.Our mission is to eliminate brain tumors throughresearch and to meet the needs of brain tumorpatients and their families.

We gratefully acknowledge the efforts of Chris Hinzand Deneen Hesser, RN, BS, OCN in the writing ofthis pamphlet. We also thank Roger Packer, MD,Chairman, Department of Neurology, ExecutiveDirector, Neuroscience & Behavioral Medicine,Children’s National Medical Center and Professorof Neurology and Pediatrics, George WashingtonUniversity, Washington, DC for his volunteer assistance in reviewing this information.

This publication was made possible by a generous donation from William Filer in memory of Cade Filer.

ISBN 0-944093-67-1

COPYRIGHT © ABTA, 2006

REPRODUCTION WITHOUT PRIOR WRITTEN PERMISS ION IS PROHIB ITED.

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IntroductionMedulloblastoma is a rapidly-growing tumor ofthe cerebellum — the lower, rear portion of thebrain. Also called the “posterior fossa,” this areacontrols balance, posture, and complex motorfunctions such as speech and balance. Tumorslocated in the cerebellum are referred to as“infratentorial” tumors. That means the tumor islocated below the “tentorium,” a thick membranethat separates the larger, cerebral hemispheres ofthe brain from the cerebellum. In children,medulloblastoma arises most often near thevermis, the narrow worm-like bridge that connectsthe cerebellum’s two sides. In adults this tumortends to occur in the body of the cerebellum,especially toward the edges.

T H E T E N T O R I U M

T H E C E R E B E L L U M

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Medulloblastoma is the most common of theembryonal tumors — tumors that arise from“embryonal” or “immature” cells at the earliest stageof their development. Other embryonal tumorsinclude histologically similar tumors such assupratentorial primitive neuroectodermal tumors,central neuroblastomas, and ependymoblastomas.These tumors are now known to be molecularlydifferent than medulloblastoma, as are otherembryonal tumors such as medulloepithelioma andatypical teratoid/rhabdoid tumors.

To a neurosurgeon, this tumor looks like a pinkishgray mass with a thickened “sugar-coating.”But under the microscope, classic medulloblastomatissue looks like sheets of densely packed, smallround cells with large colorful centers callednuclei. While this classic pattern is found in themajority of both pediatric and adult tumors, fourother notable tissue patterns include desmoplasticnodular medullobastoma, which contains scatteredislands of tumor cells in the tissue and small cysts;large-cell or anaplastic medulloblastoma, withlarge round tumor cells; medulloblastoma withneuroblastic or neuronal differentiation, in whichthe tumor cells look similar to abnormal nerve cells;and medulloblastoma with glial differentiation,whose cells look similar to the supportive, glial braincells. Two other variants, medullomyoblastoma andmelanotic medulloblastoma, are rarer and generally

T Y P E S O F M E D U L L O B L A S T O M A

� classic medulloblastoma

� desmoplastic nodular medullobastoma

� large-cell or anaplastic medulloblastoma

� medulloblastoma with neuroblastic orneuronal differentiation

� medulloblastoma with glial differentiation

� medullomyoblastoma

� melanotic medulloblastoma

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found only in children. These “histologic” tissuepatterns are used for grouping and naming thesetumors, and may someday be useful for targetingtherapies. For now, though, the subtype of medullo-blastoma does not influence the treatment plan.

Significant strides have been made in diagnosingand treating medulloblastoma. Yet these tumorsremain among the most challenging pediatricbrain tumors.

IncidenceAbout 1,000 new patients — children and adults —are diagnosed in the US each year, more often inmales than females. Medulloblastoma is relativelyrare, accounting for less than 2% of all primarybrain tumors (tumors that begin in the brain or itscoverings) and 18% of all pediatric brain tumors.More than 70% of all pediatric medulloblastomasare diagnosed in children under age 10. Very fewoccur in infancy or under age 1.

Typically a tumor of childhood, medulloblastomain adults is not common, but does occur. Aboutone-third of all medulloblastomas diagnosed inthe United States are found in adults between theages of 20 – 44. The incidence in adults sharplydecreases in frequency after age 45, with very fewolder adults having this tumor.

CauseAlthough the cause of medulloblastoma is unknown,scientists are making significant progress inunderstanding its biology. Changes have beenidentified in genes and chromosomes (the cell’sDNA blueprints) that may play a role in thedevelopment of this tumor. For example, one-thirdto one-half of all pediatric medulloblastomascontain a change on chromosome 17. Similarchanges on chromosomes 1, 7, 8, 9, 10q, 11 and16 may also play a part.

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There are a few rare, genetic health syndromesthat are associated with increased risk fordeveloping this tumor. For instance, a smallnumber of people with Gorlin’s Syndromedevelop medulloblastoma. (Gorlin’s Syndrome isan inherited tendency to develop basal cellcarcinoma in combination with other conditions.)Scientists have identified alterations on a genecalled PTCH which may be the common link.Similarly, genetic changes in the APC and TP53genes are involved in two other inheritedsyndromes, Turcot and Li-Fraumeni. People withthese syndromes tend to develop multiple colonpolyps and malignant brain tumors.

Researchers are also exploring normal brainactivity pathways, such as communicationpatterns among cells or genes. Changes in thegenes involved in cell-signaling pathways such asSHH, WNT and ERBB, have been linked to thedevelopment of medulloblastoma. Severaltherapies targeted at proteins in these pathwaysare being studied. With increased understandingof how these genetic changes contribute tomedulloblastoma, researchers may one day beable to correct or compensate for these changes.

G E N E T I C V E R S U S I N H E R I T E D

“Genetic” does not mean “inherited.” Geneticchanges are those that occur in the DNA, orthe inside blueprint, of a cell. No one knowswhat triggers these changes. Some, but not all,genetic changes can be inherited. Inheritedmeans abnormal genes are passed from onegeneration to another. Medulloblastoma is notan “inherited” disease.

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SymptomsThe early “flu-like” signs of this tumor — lethargy,irritability and loss of appetite — are often so non-specific that the disease first goes unnoticed. Ininfants, increased head size and irritability may bethe first symptoms. Older children and adults mayexperience headaches and vomiting uponawakening. Typically, the person feels better aftervomiting and as the day goes on. As the pressurein the brain increases due to a growing tumor orblocked fluid passages, the headaches, vomitingand drowsiness may increase. Other symptomsdepend on the nerves and brain structuresaffected by the tumor. Since medulloblastomasappear in the cerebellum, the center of balanceand movement, problems with dizziness andcoordination are common. Tumors growing closeto the brain’s fourth ventricle may expand intothat cavity, blocking the normal flow ofcerebrospinal fluid. This can result inhydrocephalus — the buildup of cerebrospinalfluid within one of the cavities of the brain. Thepressure of this buildup triggers the tumor’scharacteristic symptoms: Morning headaches,nausea, vomiting and lethargy.

C E R E B R O S P I N A L F L U I D F L O W

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Children with this tumor may exhibit a clumsy,staggered walking pattern. They may alsocomplain of visual problems. For instance, if thetumor involves the sixth cranial nerve whichcontrols outward muscle movement of the eye,diplopia (double vision) can occur. Nystagmus(involuntary jerking of the eye) may also be aproblem. While seizures are not common withmedulloblastoma, other symptoms such as mildneck stiffness and a tilt of the head may occur.

As many as 2 out of every 10 children withmedulloblastomas may be less than 2 years of ageat the time of diagnosis. In infants, symptoms canbe more subtle and include intermittent vomiting,failure to thrive, weight loss, an enlarging headwith or without a bulging of the soft spot of thehead (fontanelle), and inability to raise the eyesupward (the so-called “sun-setting” sign).

DiagnosisObtaining a symptom history and performing aneurological examination will be your doctor’sfirst steps in making a diagnosis. Magneticresonance imaging (MRI), done both with andwithout a contrast dye, is then used to identify thepresence of a tumor in the brain. The contrast dyeis given intravenously (into the vein) to enhancethe pictures. By concentrating in abnormal tissue,the dye makes a tumor appear much brighter thanother areas.

If a tumor suspected of being a medulloblastomais identified, an MRI of the entire spine can bedone to look for tumor in that area. PET (positronemission tomography) and MRS (magneticresonance spectroscopy) may be used todetermine if what is seen on the scan is growing,live tumor as opposed to radiation effects or non-growing tissue.

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While scans provide important and intricatedetails, microscopic examination of tissueobtained during a surgical procedure, such as abiopsy or tumor removal, confirms the diagnosis.The pathologist, a doctor who specializes instudying tissue samples, will be looking for cellpatterns that identify the tumor type. A pathologyreport usually takes about a week to be completed.It is sent to your neurosurgeon’s office, and theresults then shared with you.

TreatmentIf the tumor is determined to be a medulloblastoma,current treatment consists of surgically removingas much tumor as possible, followed bycraniospinal (brain and spine) radiation and/orchemotherapy. Your doctor will suggest atreatment plan based on factors that indicate therisk of tumor recurrence — either “average-risk”or “high-risk.” To determine risk, doctors look atthe age of the patient; the amount of tumorremaining following surgery; and the amount ofmetastases, or tumor spread (also called M stage).

Children are considered at “average-risk” ofrecurrence if they are diagnosed after age 3; if all,or nearly all, of the tumor is surgically removed;and if there is no evidence of metastases or tumorspread. All other pediatric medulloblastomas are

E N H A N C E D M R I O F A C H I L D W I T H A M E D U L L O B L A S T O M A

MRI courtesy of Dr. Packer

T U M O R

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considered to be at “high-risk” of recurrence.High-risk patients include those under age 3; if more than 1.5 cm (about 1/2 inch) of tumorvolume remains following surgery; or if there isany evidence that the disease has spread.

For adults, risk is generally determined by theamount of remaining tumor, and the presence orabsence of tumor spread.

The present staging system for medulloblastomais of major importance. However, a variety ofmolecular changes were recently identified inchildhood medulloblastoma tumors. Researchersare studying whether these findings will be helpfulin determining whether children are of average orhigh-risk disease, or if the information might helpto predict the chances of recurrence or spread.Researchers are also studying ways to obtain thisbiologic information in real-time (meaning withindays after surgery).

M S TA G E

“M stage” is a medical way of indicating thedegree of metastasis (tumor spread), if any.

M0 means no evidence of metastasis has beenfound — the tumor appears to be limited tothe area in which it grew.

M1 means there are tumor cells in the spinalfluid.

M2 means the tumor has spread within thebrain.

M3 means the tumor has spread into the spine.

M4 means tumor spread away from the brain orspine (for example, in the rare situation inwhich the medulloblastoma spread to thechest or bones).

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SurgeryRemoving as much tumor as possible is the mostimportant step in treating medulloblastoma. Theneurosurgeon has three goals for the surgery: Torelieve cerebrospinal fluid buildup caused bytumor or swelling; to confirm the diagnosis byobtaining a tissue sample; and to remove as muchtumor as possible with minimal neurologicaldamage. Several studies have shown the bestchance for long-term tumor control is when all ofthe medulloblastoma visible to theneurosurgeon’s eye can be removed safely.

Many technologically-advanced surgical tools arenow available. MRI scanning combined withcomputer-aided navigation tools help theneurosurgeon map the exact tumor locationbefore the operation, and track its removal duringthe procedure. High-powered microscopesprovide visual enhancement. Ultrasound andgentle suction devices are used to remove tumorduring the actual procedure. These techniquesassist the surgeon in navigating around adjacenthealthy structures. To read more, and see picturesfrom an actual craniotomy, please call us at 800-886-2282 and request a free copy of ourpublication, Surgery.

While the goal is to eliminate the tumor, somemedulloblastomas cannot be removed completely.In one-third of patients, the tumor grows into thebrain stem, making total removal difficult becauseof potential neurological damage. If the tumor isdetermined to be inoperable, a biopsy may still bedone to confirm the diagnosis.

Steroids are drugs used before and after surgery toreduce swelling around the tumor. Occasionally, aventriculostomy (an external drainage device) maybe placed to divert excess cerebrospinal fluidfrom the brain. A permanent shunt, a longcatheter-like tube that drains fluid from the brainto the abdomen, is sometimes necessary. In most

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cases, however, removing the tumor opens thecerebrospinal pathways, which restores bothnormal fluid flow and pressure. It also eliminatesthe need for a shunt or drainage device.

Within two days following surgery, an MRI will bedone to visualize the amount of remaining tumor.(If an MRI scanner is available in the operatingroom, the scan may be done during surgery.) Theamount of “residual” or remaining tumor will be astrong factor in determining further treatment.

RadiationFollowing surgery, medulloblastoma is usuallytreated with radiation therapy. It is an important“next-step” because microscopic tumor cells canremain in the surrounding brain tissue even aftersurgery has successfully removed the entire visibletumor. Since these remaining cells can lead totumor regrowth, the goal of radiation therapy is toreduce the number of left-over cells.

Doctors consider several factors in planningradiation therapy: The age of the patient, thelocation of the tumor, the amount of remainingtumor, and any tumor spread. Since radiating thebrain and central nervous system can be damagingto a developing brain, it is usually delayed inchildren under age 3. Initial treatment for theseyoung children includes surgery followed bychemotherapy to control the tumor. Radiationmay be delivered later, if needed.

For older children and adults, conventionalexternal beam radiation therapy is given to thebrain and spine. This area is called thecraniospinal axis. This form of radiation is given 5days a week for 5 to 6 weeks. A “boost” is given tothe posterior fossa, the region most at-risk becauseit housed the original tumor. An additional boostmay be given to areas of tumor spread. Age andrisk factors determine the total doses of radiationgiven to each area.

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While radiation therapy has proven effective,scientists are still looking for new ways to lowerthe potential side effects of this treatment.Techniques such as focused radiation, also calledstereotactic radiosurgery, aims converged beams ofradiation at the tumor. Conformal radiation allowsdoctors to shape the radiation beams to match thetumor’s contour. The goal of these focused formsof radiation is to spare normal brain tissue whiletreating tumor. Your radiation oncologist, a doctorspecially trained in the use of radiation therapy,can talk with you about the best method ofradiating you/your child’s tumor.

ChemotherapyChemotherapy uses powerful drugs to kill cancercells. For children with medulloblastoma,chemotherapy is used to reduce the risk of tumorcells spreading through the spinal fluid. Foradults, this benefit is not quite as clear since theirtumors tend to regrow in the cerebellum. Becausedifferent drugs are effective during differentphases of a cell’s life cycle, a combination of drugsmay be given. The combination increases thelikelihood of more tumor cells being destroyed.

Chemotherapy is now a standard part of treatmentfor children with medulloblastoma. Most childrenare treated in clinical trials — organized studiesthat are helping determine which treatments aremost effective. Clinical trials also offer a formalway to test new therapies against existingtherapies to learn which is better.

In children at average-risk of recurrence, currentstudies are exploring the use of chemotherapy as away to reduce the total amount of craniospinalradiation. There are several treatment plans inuse, but most focus on a combination ofvincristine, cisplatin, lomustine, and/orcyclophosphamide.

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For children at high-risk, the drugs vincristine,cisplatin, and cyclophosphamide tend to be themain focus, but others are being tested in clinicaltrials. Researchers are also looking at the use ofchemotherapy as a radiation sensitizer, and at“post-radiation” high-dose chemotherapyaccompanied by a stem cell transplant.

For infants under the age of 3, chemotherapy isused to delay or even eliminate radiation therapy.Cyclophosphamide, vincristine, cisplatin,etoposide, carmustine, procarbazine, cytarabine,and/or hydroxyurea may be found in thesetreatment plans. New drugs are underconsideration, but their effectiveness is generallydetermined in older children prior to use ininfants. Some treatment plans use higher doses ofchemotherapy, supported by peripheral stem cellrescue, for infants. There is also interest in instillingchemotherapy directly into the cerebrospinalfluid (either “intrathecally” — into the lumbarspine by spinal taps, or “intraventricularly” —into the ventricular fluids of the brain via anOmmaya reservoir). This is being done inattempts to deliver high doses of therapy to thecoating regions of the brain and reduce diseaserelapse in these areas. In addition, studies areunderway evaluating the efficacy and safety ofutilizing local radiation therapy (radiationtherapy only to the primary tumor site) afterchemotherapy in infants whose initial diseasewas limited to the posterior fossa.

In adults, the usefulness of chemotherapy is lessclear. Although large scale studies have not beendone, some smaller studies indicate adult tumorsmay likewise respond to some of the abovecombinations. But adults seem less able to with-stand potential side effects, especially those of thelomustine and cisplatin used in some treatment plans.Studies are exploring the use of cyclophosphamide,ifosfamide, etoposide, or carboplatin in adults,and other studies are exploring pre-radiationchemotherapy plans as alternatives.

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Research continues into defining the best use ofchemotherapy in average-risk patients; the besttolerated drugs in adults: and new drugs targetedto specific genetic changes found inmedulloblastomas. Your doctor will outline atreatment plan based on current studies, thepatient’s age, the amount of remaining tumor, andthe risk of further disease.

Side EffectsDespite its impact on increasing survival, thetumor and its treatment can cause significant sideeffects. Your healthcare team can speak with youabout the potential side effects of your/yourchild’s personalized treatment plan, and help youweigh risks against the benefits. Some of the morecommon effects are discussed here.

In a recent study, about 25% of children undergoingsurgery for their tumor developed delayed onset(usually 6 to 24 hours after awakening) loss ofspeech which was often associated with decreasedmuscle tone, unsteadiness, emotional lability, andirritability. This syndrome, called “posterior fossamutism syndrome” or “cerebellar mutism” seems tooccur predominantly after surgery in children withmedulloblastoma, and has not been clearly related totumor size or surgical approach. Many of thesechildren recover, but the study noted that somechildren still have significant neurologic problems -such as abnormal speech and unsteadiness — a yearafter surgery.

If mutism occurs, a speech pathologist can helpoutline a temporary communication plan for yourchild, and help initiate a rehabilitation evaluation.The rehab team can plan a program specialized toyour child’s needs and strengths.

Understandably so, parents and adult patientsoften express concern about the effects ofradiation therapy. In the short-term, fatigue, lack ofappetite, nausea, sore throat, difficulty swallowing,

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and hair loss in the path of the radiation beams arethe most common acute effects of this treatment.Adults seem to experience these temporary, short-term effects to a greater degree than children.Children appear to experience greater intensity ofthe long-term effects. Radiation may trigger adecrease in IQ or intellectual ability, accompaniedby learning disabilities, attention deficit andmemory loss. Most of this research has focused onchildren: The younger the child during treatment,the greater the potential subsequent learningchallenges. Infants and children less than 3 yearsof age are particularly vulnerable because the brainis maturing rapidly during this time. For any agegroup, however, the radiation oncologist will beable to talk with you about what you can expectbased on age and the planned dose of radiation.

Radiation can also have long-term effects on thehypothalamus and pituitary, two glands thatcontribute important hormones for bodilyfunction and growth. Since these glands aredirectly in the pathway of the radiation beam,

H Y P O T H A L A M U S A N D P I T U I TA R Y G L A N D

H Y P O T H A L A M U S

S P H E N O I D B O N E

P I T U I TA R YG L A N D

S P H E N O I D S I N U S

T H I R D V E N T R I C L E

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their normal function may be disturbed by thetreatment. As a consequence, patients can haveproblems with obesity and hypothyroidism(thyroid deficiencies). They also may experienceshort stature and scoliosis (curvature of the spine)if the spinal cord is irradiated. Patients should beevaluated carefully for hypothalamic or pituitarydysfunction and receive replacement therapy.Studies have not shown that children treated withgrowth hormone replacement are at a higher riskfor tumor recurrence.

Hearing loss may accompany the use of the drugcisplatin in children. Because this drug has animportant role in treating childhoodmedulloblastoma, scientists are testing “protective”drugs that may be able to defend a child’s hearingmechanisms from cisplatin. This research isongoing. Hearing may also be affected if radiationbeams pass near the ears; an otolaryngologist (an ear, nose and throat doctor) can be of help indiagnosing and treating this effect.

The short-term effects of chemotherapy aresimilar to those of radiation: Hair loss, nausea,vomiting, fatigue and weakness. Butchemotherapy can also lead to reduced bloodcounts and kidney problems. As patients livelonger, there’s the added risk of secondarymalignancies, such as leukemia.

Doctors continue to study the long-term effects ofboth radiation and chemotherapy in hopes ofdeveloping new agents and combinations ofagents. Discoveries continue to emerge about themolecular mechanisms used by tumor cells toevade the body’s normal growth controls, and themethods by which tumor cells move through thebrain or spine.

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Follow-upMRI scanning of the brain will be done every 2-3months and spinal MRI every 4-6 months for thefirst two years following surgery. The scans helpdetermine the effectiveness of treatment, and areused to monitor for early evidence of arecurrence. Scans will be done less frequentlythereafter, unless specific symptoms develop thatmight indicate further growth. Your doctor willdetermine the appropriate schedule.

Children should be carefully evaluated forlong-term cognitive problems, and shouldreceive early aggressive learning support.

Neuropsychological testing before treatment canserve as a baseline for followup evaluations. Iflearning concerns arise after treatment, thesebaseline results can be used as a tool forcomparison. Children should be carefullyevaluated for long-term cognitive problems, andshould receive early aggressive learning support.In addition, your doctor may refer you to otherspecialists, such as an endocrinologist (aphysician specially trained in treating growth orhormone imbalances), or an oncologist (aphysician trained in treating cancer, particularlywith chemotherapy drugs). Rehabilitation andspecial education programs will play a vital rolein returning children to school.

RecurrenceTumors recur when all the tumor cells cannot beremoved by surgery or killed by other treatments.In children, medulloblastoma tends to “seed” ordrop tumor cells into the spinal fluid. These cellscan give rise to tumor growth in the spine. This typeof spread may or may not be accompanied by tumorregrowth in the cerebellum. In adults, the tumortends to first regrow in the cerebellum. On very rareoccasions, the tumor may spread elsewhere in, andoutside, of the central nervous system.

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Recurring medulloblastoma is treated aggressivelywith repeated surgery, re-irradiation if possible,and chemotherapy. Recurrences limited to thecerebellum (the posterior fossa) offer the bestchance of long-term survival since treatment canbe aimed at the “local” site. Surgery or radiationtherapy focused on the regrowth may be a choice.Chemotherapy may be of benefit if the tumorspreads beyond the local area. If chemotherapywas not used for the initial tumor, it may now be aconsideration. Patients who previously receivedchemotherapy can be given different drugs for therecurrence. High-dose chemotherapy may beconsidered, as might a clinical trial investigatingnew therapies.

PrognosisHow well a patient responds to treatment isaffected by their age at the time of diagnosis; thesize and extent of the tumor; the amount of massthat can be removed safely; and the level ofmetastatic disease (the M stage).

Overall, the Central Brain Tumor Registry of theUnited States reports about 65% – 70% of adults(age 20+) with medulloblastoma are alive at 5 yearsfollowing diagnosis. It is important to realize thesestatistics do not reflect differences in outcomebetween low risk and high risks groups (sincehigh risk groups may not do as well), differencesin patient characteristics, nor differences betweenpatient responses to treatment.

With current therapies, 70% – 80% of childrenwith average-risk medulloblastoma can beexpected to be alive and free of disease five yearsfrom diagnosis. Even in those children with high-risk disease, effective therapy is possible andresults in long-term disease control in as high as60% – 65% of patients. Outcome for infants ispoorer, but for those infants with localized diseaseat the time of diagnosis, survival rates in the 30% –50% range are being seen.

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Take the opportunity to speak with the healthcareteam treating you or your child to learn how thesestatistics apply to your individual situation.

ResourcesMedulloblastoma patients have a significantlyincreased chance of survival, thanks to improvedtreatment techniques. The best results, however,occur when patients are cared for by anexperienced multi-disciplinary team of medicalprofessionals at an established pediatric or adultcancer center.

Additional treatment information about this tumorcan be obtained from the Cancer InformationService (CIS) at 800-422-6237. CIS can provideyou with information about medulloblastomas inadults or children, and/or a listing of clinical trials(research treatments) for medulloblastoma.

Support groups and pen-pal programs allow youto share experiences with others in the samesituation. ABTA social workers and informationspecialists can help you find these networks,as well as sources of financial assistance,transportation help, educational resources, orrehabilitation programs. We also offer a video/DVD, Alex’s Journey, for children ages 9–13diagnosed with a brain tumor. Please call us at800-886-2282 for these and other services.

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A Next StepOur web site — www.abta.org — offers extensivebrain tumor information, treatment and researchupdates, and patient/family stories. A pen-palprogram, Connections, links people interested inthis disease with others. ABTA social workers canhelp parents explain this disease, and providesupport, in language children understand.Parent/teacher education packets help ease yourchild’s return to their classroom. Our memoryretraining, rehabilitative medicine, andemployment resources may be of help tosurvivors and their families. Please call us at 800-886-2282 or visit our web site to access theseprograms. The thread that runs through each ofour services and programs is hope. Becomeinvolved — join us in some way to move towardsa cure, and ultimately, prevention of brain tumors.

We hope that the information in this booklethelps you communicate better with the peoplecaring for you or your child. Our purpose is notto provide answers; rather, we encourage you toask questions.

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Questions I Want to Ask

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Publications & ServicesB U I L D I N G K N O W L E D G EDictionary for Brain Tumor PatientsLiving with a Brain TumorA Primer of Brain Tumors

F O C U S I N G O N T U M O R SEpendymomaGlioblastoma Multiforme and Anaplastic AstrocytomaMedulloblastomaMeningiomaMetastatic Brain TumorsOligodendroglioma and Oligoastrocytoma Pituitary Tumors

F O C U S I N G O N T R E AT M E N TChemotherapyConventional Radiation TherapyStereotactic RadiosurgerySteroidsSurgeryPhysician Resource List: Physicians Offering Clinical Trials for

Brain Tumors

F O R & A B O U T C H I L D R E NAlex’s Journey: The Story of a Child with a Brain Tumor (Video or DVD)Education Packet (Parent or Teacher)When Your Child Returns to School

S U P P O R T R E S O U R C E SBibliographyCare OptionsEmergency Alert Wallet CardsEmployment InformationEnd-of-Life CareFinancial Aid ResourcesHealth Insurance ResourcesHousing During Treatment ResourcesNet-Working LinksNeuropsychology ResourcesScholarship & Educational Financial Aid ResourcesSocial Security Disability ResourcesSpanish-Language ResourcesTransportation Assistance ResourcesWig and Head Covering ResourcesWish Fulfillment Resources

N E W S L E T T E RMessageline NewsletterSharing Knowledge, Sharing Hope e-News

F O C U S I N G O N S U P P O R TListing of Brain Tumor Support GroupsListing of Bereavement (Grief) Support GroupsOrganizing and Facilitating Support GroupsPen Pal Programs

Connections (program for patients and family members)Bridges (program for those who have lost someone to a brain tumor)

Resources for Online SupportTLC (Tips for Living and Coping) e-bulletinSingle copies of our publications are available free of charge.

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Sharing knowledge. Sharing hope.

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