Let’s Talk About Medulloblastoma

It often starts with something subtle: a morning headache that vanishes by noon, a sudden bout of clumsiness on the playground, or bouts of morning nausea. For hundreds of families each year, those small signs lead to a life-altering cancer diagnosis: medulloblastoma. 

Behind the complex medical terminology, molecular subgroups, and treatment protocols are real people and their families navigating an entirely unexpected journey. National Brain Tumor Society’s Let’s Talk About Medulloblastoma guide combines expert insights with the lived experiences of survivors and families to help people understand the unique experiences and challenges of a medulloblastoma diagnosis.

Table of Contents:
Stats & Risk Factors
Symptoms
Lived Experiences
Importance of Biomarker Testing
Medulloblastoma Subgroups
Metastatic Medulloblastoma
Relapsed/recurrent Medulloblastoma
Treatment
Quality of Life

What is medulloblastoma?

Medulloblastoma is a fast-growing grade 4 tumor that develops from early, immature brain cells called fetal or embryonic cells. The tumor forms in the cerebellum, which is an area in the back of the head that controls balance, coordination, movement, and fine motor skills. This tumor most commonly occurs in children under the age of 10.

“I usually say [to parents of newly diagnosed patients] that there are cells that develop into our brain normally, and sometimes that program that says I’m going to form the brain has an error, and that cell becomes abnormal,” said Tobey MacDonald, MD, Director of the Neuro-oncology Program and Aflac Endowed Chair for Pediatric Neuro-oncology of the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. “The one cell that’s abnormal gives rise to a group of abnormal cells that, when clumped together, we can now see as a tumor, and this forms in the back of the patient’s brain called the cerebellum. It’s nothing they were exposed to or did or didn’t do, but just an act of nature in the process of the brain developing. It was an error that was not corrected.”

Key Statistics

• According to CBTRUS, an estimated 430 Americans will be diagnosed with medulloblastoma each year.
  • In kids ages 0-14, an estimated 278 Americans will be diagnosed each year.
  • In adolescents and young adults (ages 15-39), an estimated 117 Americans are diagnosed each year on average.
  • In adults 40 and older, an estimated 35 Americans are diagnosed each year. 
• Medulloblastoma is one of the most common malignant brain tumors in children. American Cancer Society reports that “about 1 in 5 cancerous brain tumors in children is medulloblastoma.”
• Medulloblastoma is rare in adults, accounting for less than 1% of all adult CNS tumors.
• National Cancer Institute (NCI) reports that adults diagnosed with medulloblastoma are typically between 20 and 40 years old.
• In children and adolescents (ages 0-19), medulloblastomas make up 69.1% of all embryonal tumors, according to CBTRUS. 
• As of 2019, an estimated 6,070 people are living with medulloblastoma in the U.S., per NCI. 
• Medulloblastoma is more common in males than females. In group 3 and group 4 medulloblastomas, “males are three times more prevalent than females.”
• About 70% of medulloblastoma cases occur in kids younger than 10, with the highest concentration found between ages three and seven.

Risk Factors

According to an article in Clinical and Experimental Medicine, “approximately 5-6% of pediatric medulloblastomas involve germline mutations,” which are gene changes passed from parents through the egg or sperm to their offspring, also known as inherited mutations. The NCI explains that these changes then become “incorporated into the DNA of every cell in the body.”

In these rare cases, germline mutations can cause genetic disorders that can put someone at a higher risk of medulloblastoma, including:

• Fanconi anemia
• Gorlin syndrome (nevoid basal cell carcinoma syndrome)
• Li-Fraumeni syndrome
• Turcot syndrome

The National Comprehensive Cancer Network (NCCN), which sets the medulloblastoma standard of care treatment guidelines for physicians to follow, recommends “germline testing and genetic counseling in all diagnosed cases of medulloblastoma.” Germline testing is a laboratory test that looks at an individual’s DNA to see if they have inherited a genetic change that increases their risk of cancer. It is a different test from biomarker testing, which is done on tumor tissue to look for specific mutations, gene alterations, proteins, and/or other biomarkers of that tumor.

What are common medulloblastoma symptoms?

Most people with medulloblastoma present with signs and symptoms related to increased pressure within the skull, such as headache, nausea, and vomiting.

“Because of the buildup of pressure due to the fluid in the brain that’s being blocked by the tumor (hydrocephalus), you get morning headaches, which tend to worsen over time,” Dr. MacDonald said. “Usually when the morning vomiting occurs, the headache is decreased or alleviated from that. Sometimes you’ll see lethargy with the patient gradually becoming more and more tired due to pressure buildup.” 

The most common medulloblastoma symptoms include:

• Headache
• Nausea
• Vomiting
• Lethargy
• Unsteady gait
• Coordination difficulties
• Abnormal side-to-side eye movements (nystagmus)

“Because of where this tumor is, it can trap the nerves to our eyes that make movements right and left,” Dr. MacDonald said. “You can get one eye that can’t move all the way out to one side.”

Lived Experiences: Real Stories from the Medulloblastoma Community

Brain tumor community members generously shared the signs and symptoms they or their loved ones experienced before they were diagnosed with medulloblastoma.

Why does biomarker testing matter in medulloblastoma cases?

Biomarker testing, also called molecular testing or tumor profiling, analyzes a patient’s brain tumor tissue at the molecular level to identify the genes, proteins, or other biological data that are expressed. 

“For some pediatric brain tumors like medulloblastoma, the molecular subgroup that we get from methylation really informs our understanding of the disease, prognosis, and often how we treat it,” said Margot Lazow, MD, MS, a pediatric neuro-oncologist at Nationwide Children’s Hospital. “So now it’s considered standard of care that we would obtain methylation testing.”

Medulloblastoma tumors can only be accurately identified by knowing their molecular makeup. Testing the tumor not only informs the diagnosis but also provides prognosis and guides treatment decisions.

Doctors use a process called risk stratification to determine the tumor’s risk of recurrence and how aggressive treatment needs to be. Medulloblastoma tumors can be considered low, average (also called standard), high, or very high risk. Doctors decide a tumor’s recurrence risk by reviewing the following information:

• Molecular features of the tumor
• How the tumor looks under a microscope (histology)
• Patient’s age
• How much tumor was left after surgery
• Whether the cancer has spread or not

“It’s critical today to have the molecular subgrouping known,” Dr. MacDonald said. “We also want to know if you have biomarkers that put you at high risk or not. If the tumor doesn’t have any of those high-risk biomarkers, it allows us to give less radiation to the brain and spine, which reduces long-term late effects.” 

Examples of high-risk biomarkers include:

• A mutation in the TP53 gene in SHH-activated medulloblastoma
• MYC amplification (increased amounts of the gene called MYC) in non-WNT/SHH medulloblastoma
• MYCN amplification (increased amounts of the gene called MYCN) in SHH-activated tumors

By integrating molecular subgrouping with specific biomarkers, medical teams can avoid a one-size-fits-all approach. Instead, they can escalate therapy when necessary to overcome aggressive disease while de-escalating treatment whenever possible to protect a child’s long-term brain development.

One Family’s Biomarker Testing Experience

For Jillian F., biomarker testing completely changed the team’s approach in treating her daughter Emmie’s medulloblastoma. After Emmie’s first chemo treatment, her liver levels weren’t coming down like the team wanted, and her kidney levels were spiking. While they were trying to regulate her levels, the pathology report came back with the biomarker testing results. 

They learned that Emmie’s tumor had a double BRCA2 mutation, and further testing confirmed a diagnosis of Fanconi anemia (FA)— a rare genetic disorder. 

Because both Jillian and her husband were carriers, it was an even rarer FA subgroup called complementation group D1 (FA-D1). An article in Best Practice & Research Clinical Haematology gives a 97% probability that children with FA-D1 will be diagnosed with cancer by age 7. The Genetic and Rare Diseases Information Center reports that the “spectrum of childhood cancers [includes] Wilms tumor, brain tumor (often medulloblastoma), and ALL/AML.” This additional FA-D1 diagnosis came as a complete surprise to the family because they had no idea they were carriers until after Emmie’s brain tumor surgery.

Because Fanconi anemia severely impairs the body’s ability to repair damaged DNA, standard high-dose medulloblastoma chemotherapy would have caused widespread, life-threatening toxicity to her healthy tissue. This discovery forced the medical team to halt traditional chemotherapy immediately. 

“They couldn’t treat with traditional chemo because we would have destroyed everything in her DNA makeup,” Jillian said. “The goal was to get her stable, get this treated, and then we’ll do a bone marrow transplant.”

What are the different medulloblastoma subgroups?

Due to scientific advances in biomarker testing, the 2021 WHO Classification of Tumors of the Central Nervous System defined four main molecular subgroups of medulloblastoma:

• WNT-activated
• Sonic Hedgehog (SHH)-activated and TP53-wildtype
• Sonic Hedgehog (SHH)-activated and TP53-mutant
• Non-WNT/non-SHH medulloblastoma (this includes group 3 and group 4 medulloblastoma)

Within these four subgroups, there are additional molecular subtypes.

WNT-Activated Medulloblastoma

The least common subgroup is WNT-activated (pronounced “wint”), which accounts for about 10% of all medulloblastomas. 

“It usually occurs in older kids, closer to the teenage years, and survival is quite good with the current treatment that we have,” Dr. MacDonald said. “About 90-100% of children with WNT medulloblastomas will survive.”

These tumors are driven by a mutation in the WNT signaling pathway, which plays an important part during embryonic development, sending chemical commands that tell young cells when to multiply, where to travel, what specialized job to take, and how to stay alive while a body builds itself. When functioning normally, this messaging system ensures organs like the brain form with the right shape, size, and cell types. However, if a mutation locks these commands on permanently, the cells won’t get the signal to stop dividing and become mature brain cells. Over time, these immature cells accumulate and form a medulloblastoma tumor.

Most of these mutations occur in the CTNNB1 gene, which can allow these immature cells to keep dividing. While this mutation fuels tumor formation, researchers hypothesize that it also prevents the tumor’s blood vessels from developing a normal blood-brain barrier, so chemotherapy can more effectively penetrate the tumor than other brain cancers.

A small percentage of these tumors result from an inherited (germline) mutation in the APC gene. That’s why people with a rare genetic disorder called Turcot syndrome have a higher risk of developing WNT-activated medulloblastoma. 

Current clinical trials for WNT-activated medulloblastoma are evaluating whether doctors can reduce radiation and/or chemotherapy doses to spare young patients from long-term side effects.

Sonic Hedgehog (SHH)-Activated Medulloblastoma

About 30% of medulloblastomas fall into the Sonic Hedgehog (SHH)-activated subgroup. In adults, this type makes up 60% of all cases, according to Acta Neuropathologica.

During embryonic and early childhood development, the Sonic Hedgehog signaling pathway — a sequence of chemical interactions between specific proteins — tells cerebellar precursor cells to divide and multiply. Once the cerebellum fully forms, this chemical signaling sequence stops completely. Genetic mutations can alter the proteins that turn this pathway off, so the precursor cells continue to divide indefinitely and form a tumor mass. 

The specific SHH medulloblastoma genetic mutation(s) can differ by tumor, with the 2021 WHO Classification of Tumors of the CNS identifying these alterations: TP53, PTCH1, SUFU, SMO, MYCN, and GLI2.

Given these many differences, scientists have further divided these tumors into two groups based on TP53 status (SHH-activated and TP53-wildtype or SHH-activated and TP53-mutant) and four molecular subgroups (SHH-1, SHH-2, SHH-3, and SHH-4) to help categorize cases.

TP53 is a gene that tells the body how to make a protein called p53, often nicknamed the “guardian of the genome.” Its job is to monitor cells for DNA damage; it either repairs the damage or tells the cell to self-destruct if it cannot be fixed, preventing tumors from forming. When a TP53 mutation occurs, this protective protein stops working, allowing damaged cells to grow and divide uncontrollably. As a result, SHH-activated and TP53-mutant medulloblastoma is considered more aggressive.

While most SHH-activated medulloblastomas are caused by spontaneous DNA mutations (called somatic mutations), an estimated 20-25% of cases result from inherited genetic mutations present in all cells from birth. For example, inherited PTCH1 or SUFU mutations cause Gorlin syndrome, and inherited TP53 mutations cause Li-Fraumeni syndrome. 

Non-WNT/SHH Medulloblastoma

Non-WNT/SHH medulloblastomas (comprising group 3 and group 4) originate from distinct developmental structures and cell types in the central midline of the cerebellum. Unlike WNT-activated or SHH-activated medulloblastoma, there is no identified pathway in which mutations are responsible for non-WNT/SHH medulloblastoma. 

“Something goes awry very early on in the cells that form a specific part of the cerebellum,” Dr. MacDonald said. “Group 3 and group 4 are along the same continuum. Group 3 and group 4 are probably from the same cells but at a different maturation point of the developing cerebellum, with the later point being group 4, the earlier being group 3.”

Group 3 Medulloblastoma

Group 3 medulloblastoma represents about 25% of all medulloblastoma cases and occurs primarily in infants and young children. 

“Group 3 medulloblastoma is the most aggressive one with a high percentage of metastatic disease in up to 50% of kids,” Dr. MacDonald said.

About 20% of these tumors have a specific genetic error in which a cell contains extra copies of the MYC gene, called MYC amplification. This extra genetic material leads to overproduction of the MYC protein, which directly accelerates cellular division and protects tumor cells from natural cell death.

Group 4 Medulloblastoma

Group 4 medulloblastoma is the most common subgroup, accounting for 35% of all medulloblastoma cases. According to an article in Anticancer Research, an estimated one-third of group 4 medulloblastoma patients have metastasis at diagnosis. 

About 80% of these tumors have the isochromosome 17q (i17q) genetic alteration, which involves the loss of the short arm and duplication of the long arm of chromosome 17. 

Can medulloblastoma metastasize?

Medulloblastoma frequently expands into or near the fourth ventricle, a tent-shaped cavity in the brainstem through which cerebrospinal fluid (CSF) flows before traveling around the spinal cord and the rest of the brain. Because of this location, medulloblastoma can spread to other parts of the brain and spinal cord more readily than other primary brain tumors, as its embryonic cells can shed into circulating CSF that then carries them elsewhere. 

“When these cells metastasize, they are pretty much restricted to the brain and spine,” Dr. MacDonald said. “We used to look at the lung, liver, and bones when I first started 30 years ago, but we don’t anymore because it’s so rare for the tumors to go out of the central nervous system into other organs or parts of the body. Metastasis beyond the CNS can occur at the very terminal phase of the disease, and it can be a rare complication after a shunt is placed that drains the built-up CSF into the abdominal cavity.”

Dr. MacDonald estimates that about 30% of all medulloblastoma patients will present with metastatic disease at the time of diagnosis. Each molecular subgroup differs in the percentage of patients who will present with metastatic medulloblastoma.

• WNT-activated medulloblastoma: Less than 10% of patients at diagnosis
• SHH-activated medulloblastoma: Between 15-20% of patients at diagnosis
• Non-WNT/SHH medulloblastoma: Between 40-50% of patients at diagnosis

“Metastatic disease puts you in the high-risk group and makes us go to more aggressive treatment,” Dr. MacDonald said. “But it doesn’t necessarily mean that you will do less well.”

Did You Know? Leptomeningeal spread (LMS) is when cancer has spread to the CSF or the thin layers around the brain and spinal cord called leptomeninges. LMS “remains the major cause of mortality in children with medulloblastoma,” according to an article in Science Translational Medicine. 

Research supported by the National Brain Tumor Society, through its DNA Damage Response Consortium, at Yale Cancer Center is pioneering a novel nanoparticle therapy to target medulloblastoma that spreads into the CSF. Scientists engineered bioadhesive nanoparticles carrying targeted drugs (PARP inhibitors) to deliver them directly into the CSF, where they stick to tumor surfaces and slowly release treatment over three weeks. This approach bypasses the blood-brain barrier, targeting metastatic cells without the severe toxicity of traditional therapies. In the study, mouse models of medulloblastoma saw significant improvements in survival and the prevention of LMS, making this approach a potential promising new treatment strategy.

How common is relapsed or recurrent medulloblastoma?

An article in The Lancet reports that “relapse occurs in around 30% of children with medulloblastoma.”

There is no standard of care for recurrent medulloblastoma, so care teams will consider life-prolonging treatment options like surgery, re-irradiation, clinical trials, and chemotherapy.

Prognosis remains poor for relapsed/recurrent medulloblastoma “with a median survival of less than six months.” Sadly, 10% of all childhood cancer deaths are due to relapsed medulloblastoma.

How is medulloblastoma treated?

Standard treatment for medulloblastoma involves a combination of surgery, radiation therapy, and chemotherapy, with specific protocols tailored to the patient’s age and level of risk.

Surgery

Regardless of subgroup, brain surgery (craniotomy) is the first step to remove as much of the tumor as possible. 

“We know that maximal safe surgical resection of the tumor has the best outcome,” Dr. MacDonald said. “We just need the tumor to be almost gone through surgery, but it doesn’t have to be all gone.”

Unfortunately, surgery comes with a risk of complications, including posterior fossa syndrome.

What is posterior fossa syndrome?

Posterior fossa syndrome (PFS), also called cerebellar mutism syndrome, is a set of neurological, motor, and emotional deficits that can occur following surgical resection of a tumor from the posterior fossa region of the brain, most commonly medulloblastoma. According to St. Jude Children’s Research Hospital, “about 25% of children who have surgery to remove medulloblastoma will develop posterior fossa syndrome.” 

“We don’t know the exact cause — only that any surgery to that area, whether it’s a tumor or not, can cause this problem,” Dr. MacDonald said. “Obviously, there is a communication loop within the cerebellum that we don’t fully understand, but when it’s disturbed by surgery or the tumor removal, it can cause a very gross exaggeration of problems with coordination and speech.”

Typically, posterior fossa syndrome symptoms begin within one to three days after surgery. Posterior fossa syndrome symptoms include:

• Severe reduction or complete loss of speech
• Motor skill challenges, such as the inability to walk
• Mood changes
• Difficulty swallowing

In the long term, if symptoms haven’t resolved within a few weeks, patients may experience persistent cognitive difficulties with attention, executive function, and processing speed.

According to the National Cancer Institute, there are a few risk factors for PFS:

• Younger age
• Larger tumor size
• Midline tumor location
• Surgery at low-volume centers

A study published in Neuro-Oncology found that posterior fossa syndrome was more common in patients with group 3 and group 4 medulloblastomas (30-35%) and less common in patients with SHH-activated medulloblastoma (7%).

Lived Experiences with Posterior Fossa Syndrome

Radiation Therapy

Radiation therapy is an essential component of medulloblastoma treatment for patients older than three years of age. Because medulloblastoma cells frequently spread through cerebrospinal fluid, treatment typically involves craniospinal irradiation (CSI), which delivers radiation to the entire brain and spinal cord. The tumor’s risk level determines how much CSI the patient receives.

“Radiation for those outside the infant range has caused the greatest improvement in survival,” Dr. MacDonald said. 

The younger the patient is when getting radiation therapy, the greater the risk of having lasting side effects. As a result, doctors try to avoid radiation in children three years of age or younger, which is classified as the infant group.

“Radiation is never good for anyone’s brain,” Dr. MacDonald said. “Even now, if you’re four or five years of age, we might look to these radiation-sparing treatments that we now have. The hardest part is for parents to make an informed decision with all the information I give them about whether to do a full-dose radiation or a lower-dose radiation, with the parents trying to balance survival with disability and learning.”

Chemotherapy

NCCN guidelines state that medulloblastoma patients over the age of three, regardless of risk level, should have chemoradiation followed by maintenance chemotherapy. Chemoradiation is when someone receives radiation therapy and chemotherapy at the same time. The chemoradiation regimens used will slightly vary based on the tumor’s risk level. 

For infants and young children, high-dose chemotherapy protocols (often combined with autologous stem cell rescue) serve as a way to treat the disease while delaying or entirely avoiding the severe neurocognitive risks associated with craniospinal radiation.

To reach cancer cells deep within the brain, infants require significantly higher chemotherapy doses than standard protocols allow. However, these elevated doses severely damage the bone marrow, stopping the production of normal blood and immune cells. Care teams overcome this with a multi-step rescue process:

1. Harvesting: Blood stem cells are collected from the infant early in treatment.
2. Freezing: These stem cells are frozen and stored safely, protecting them from exposure to the high-dose chemotherapy.
3. High-Dose Treatment: The patient receives intense chemotherapy on a specialized transplant floor to eliminate remaining brain tumor cells.
4. Reinfusion: The patient’s own stem cells are thawed and returned to their bloodstream, allowing their bone marrow to rebuild healthy blood cells rapidly and preventing life-threatening infections.

“We’ve been actually really successful with this regimen in some groups,” Dr. MacDonald said. “The Sonic Hedgehog group in infants has a nearly 80% survival without any radiation, so that’s been a very beneficial outcome of the high-dose chemotherapy. For infants with group 3 medulloblastoma, we added a chemotherapy called high-dose methotrexate at the beginning of the treatment. Survival improved significantly, from about 30% to almost 70%. That was a big step, especially when avoiding radiation, which can have devastating effects at that age.”

When should a patient consider a clinical trial for medulloblastoma?

NCCN, which sets the medulloblastoma standard of care guidelines for physicians to follow, “encourages enrollment in molecular classification-based clinical trials, if available.”

The two most important windows of opportunity for considering a medulloblastoma clinical trial are at initial diagnosis to access optimized therapies that minimize side effects, and if the disease recurs after standard treatment.

“Every time we seek to improve our current treatments, we usually take what we know works the best to date, and then add a new treatment or strategy to it to either make the standard treatment work better, or in the case of the good-risk disease, we’ve added something (or reduced the intensity of the treatment) where we try to protect against the damaging late effects of treatment and preserve function, such as your hearing or your learning,” Dr. MacDonald shared. “We’re trying to use standard therapy, but then make it better. So, if a national clinical trial is available when you’re first diagnosed, you should look at it and discuss with your oncologist to see if it is the right fit for you. Patients who relapse and have received radiation as part of their standard therapy should also look to see if a clinical trial is available to them.”

NBTS’s Clinical Trial Finder helps people search for clinical trials and receive tailored results based on their or their loved one’s location, diagnosis, tumor grade, biomarkers, and treatment history.

How do medulloblastoma treatment and side effects impact quality of life?

Survivors can navigate late effects of medulloblastoma and its treatment for the rest of their lives.

“I wish the general public understood that once treatment is finished, it doesn’t mean the child is fine,” Susie said.

Common quality of life challenges include:

• Hearing loss
• Neurocognitive difficulties
• Hormonal complications
• Risk of stroke and secondary malignancies
• School and relationship challenges

“Theo has overcome more challenges than most people are faced with in a lifetime,” Theo’s mom Lori said. “Some of the effects of his tumor and treatment are hearing loss, vision issues, speech delay, extensive dental issues, fine and gross motor deficits, and growth hormone imbalance. As his parents, we sometimes worry that Theo will view these challenges as barriers. But, more often than not, Theo proves to us and everyone else that nothing can stop him.”

Hearing Loss

An estimated 75% of children who receive medulloblastoma treatment will experience some hearing loss (also called ototoxicity), according to St. Jude Children’s Research Hospital. A common chemotherapy drug called cisplatin can damage cochlear hair cells, impacting one’s hearing. In 2022, the FDA approved sodium thiosulfate to reduce the risk of hearing loss associated with cisplatin in patients one month and older with solid tumors, like medulloblastoma, that have not metastasized. 

Neurocognitive Difficulties

Long-term neurocognitive late effects caused by medulloblastoma treatment can include:

• Slower processing speed
• Executive dysfunction
• Increased distractibility
• Academic struggles with math, reading, spelling, and problem-solving
• Working memory deficits

As shared in a Neuro-Oncology editorial, “adult survivors of medulloblastoma who were diagnosed during childhood have up to a fivefold increased prevalence of neurocognitive deficits when compared with siblings in terms of memory, attention, and processing speed.”

A Neuro-Oncology article found that there are a few risk factors for intellectual and academic decline after treatment in medulloblastoma survivors: hearing loss, posterior fossa syndrome, younger age at diagnosis, and high-risk disease requiring higher doses of radiation.

“Eve is going to be 18 next month, and she just graduated high school, which is surreal,” her mother Susie said. “After years of neurocognitive testing, I think her biggest challenge is a slowed processing speed, and that just affects everything in the classroom. She’s capable of understanding material — just needs it way slower and with repetition.”

Life-long Hormonal Challenges

Survivors must often navigate endocrine abnormalities, most commonly experiencing growth hormone deficiency (94% of survivors). Other hormonal complications may include thyroid problems or early or delayed puberty. Many significant endocrine abnormalities require lifelong management, doctor appointments, and medication.

NCCN guidelines recommend follow-up endocrine tests at least annually for five years after treatment. More frequent testing can be done “if thyroid-stimulating hormone or growth failure is suspected.”

Stroke & Secondary Malignancy

Medulloblastoma survivors face an increased risk for stroke (5-10%) as well as an elevated risk of developing new tumors later in life. A long-term study of nearly 1,000 survivors found meningiomas accounted for one-quarter of secondary tumors in medulloblastoma survivors.

“Cancer survivorship is a journey that never ends, whether you are an adult, adolescent, or child,” childhood medulloblastoma survivor Elizabeth A. said. “Even though I may want to put my experience behind me and move on, I can’t. Along with other late effects from my treatment, I was diagnosed last year with three benign meningiomas, which my doctors say are from the radiation therapy I received 20 years ago. Now, a whole new journey of uncertainty has begun as my care team focuses on treating and managing these new tumors and their side effects.”

Fertility Concerns

Medulloblastoma treatment may impact the patient’s fertility. For example, patients receiving a chemotherapy regimen for high-risk disease have a 70% chance of reproductive side effects.

Pre-pubertal patients may not have developed mature eggs or sperm, but their gonads (ovaries or testes) are still susceptible to damage from cancer treatment. That’s why the NCCN panel recommends “referring patients to infertility risk/fertility preservation counseling, especially for those who are or will be treated with chemotherapy.”

There are fertility preservation options for pre-pubertal and post-pubertal patients that can be discussed with a reproductive specialist.

Difficulties Navigating School and Relationships

Medulloblastoma survivors may experience challenges far beyond medical side effects. Returning to school, securing necessary accommodations, and maintaining friendships after a life-changing diagnosis can be an uphill battle for both children and parents.

The Social Cost of Missing School

Extended treatment means missing shared childhood milestones, which can make social re-entry difficult and isolating.

“A few skills you learn in third grade, I sometimes still struggle with because I never really got to go to third grade,” Aleyna R. said. “Having cancer as a kid can affect your relationships. You don’t get to really be with people as much during treatment, so your relationships get affected. I know to this day, a lot of people I went to school with in elementary school, they had these groups that were formed that year while I was gone, and I never got to be in a group, so really up until high school, I was an outsider.”

Physical side effects can compound that social disconnect. After receiving a shunt to drain built-up cerebrospinal fluid, Aleyna experienced severe dizziness on roller coasters, preventing her from joining friends on outing activities to carnivals and theme parks.

For many young patients, staying on pace with peers becomes their primary anchor to normal life.

“It was a struggle to know that everyone is progressing and going through life around me,” Nitin said. “Normalcy was the biggest thing on my mind throughout the entire journey. That’s why I was so determined to finish seventh grade, which is when I was diagnosed, so I could still be in the same grade as my friends and eventually graduate with my friends.”

To maintain a physical presence in the classroom during extended hospitalizations, some families rely on creative tools. When Kasey Z. missed class, her family used Monkey in My Chair, a program that places a large stuffed monkey in an absent child’s desk to keep classmates connected to them throughout treatment.

Fighting for Educational Support

Beyond the social hurdles, parents face the exhausting administrative burden of advocating for formal learning accommodations while simultaneously managing critical medical care.

“She was a functioning kid as a kindergartner and then first grader,” Joe said. “The impacts of radiation and chemo hadn’t been seen yet, but she was missing a ton of school, and the last thing we had the energy or patience for was catching up on schoolwork at home. It was really frustrating. You’re focused on treatment, you’re focused on surgery, you’re focused on all the medical things, but you shouldn’t have to go toe to toe with the school system to get your kid support.”

Filling the Home With Love

Navigating medical systems, social isolation, and academic disruption can feel overwhelming. Families can find strength by focusing on the environment they create at home and in the hospital.

For Susie, a key piece of advice from her daughter’s care team shifted her entire mindset through the hardest moments: “I remember a neurologist saying to me, ‘You’re going to be seeing all of these doctors and specialists for a long time, but what I would recommend — and studies have shown — is to fill the room with love every time you’re around her. The body and the system really pick up on that.’ I always kept that in perspective because you can’t necessarily control what happens, but you can control what you do with it. Filling the room with love looks like not taking anything for granted. We find every opportunity for laughter, happiness, and adventure.”

TAGGED WITH: Medulloblastoma

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