Introduction
When a child receives a brain cancer diagnosis, the world stops. As a parent or guardian you are plunged into an experience that requires a lot of decision-making and you will want to do everything you possibly can to protect and help your child.
Navigating the experience of brain cancer is overwhelming. Caregiving, the practicalities, and the emotions that come with, is complex and challenging.
Trying to learn about brain cancer while in the middle of the diagnosis, and/or with surgeries already occurring, is immensely challenging.
We hope the information on this website is helpful.
- Information contained on this website, including information accessed through the links provided, is not intended to be a substitute for professional, medical advice, diagnosis, or treatment.
- Links to other websites are provided for the purpose of information and does not constitute a referral or endorsement of any of these websites, owners, services, or content on those sites.
- Brain Cancer Canada cannot guarantee the accuracy, completeness, efficacy, or timeliness of information presented in the links below, whether by our volunteers, users of our site, or third parties.
- Brain Cancer Canada assumes no liability regarding any content on this website.
- Reliance on any information provided through these links is solely at the user’s risk.
- The information included on this website is intended to offer patients and caregivers some support, in anticipation of some of the needs and concerns that may arise. This is by no means a fully exhaustive list of available supports.
Brain Cancer Canada anticipates an update to WHO disease classifications in 2026. Adjustments to the content presented on this site is expected thereafter.
It is important to know that all brain cancers are tumours, however, not all brain tumours are cancerous.
Tumours that are not cancerous are called benign tumours. Benign tumours, like cancerous tumours, can be debilitating and can have severe impacts on quality of life. There are some examples of benign tumours that can become malignant, though, this is rare.
Tumours that are cancerous are called malignant tumours. Malignant tumours can grow rapidly and spread into healthy brain tissue and structures. Brain cancer can be life-threatening for this reason.
Metastatic brain tumours are malignant tumours that start as cancer in the body somewhere other than the brain, and then spread to the brain. Metastatic brain tumours are 4 times more common than primary brain tumours and are also rapidly growing.
Brain cancer is frequently referred to as a primary, malignant, brain tumour. Primary is the term used to describe that the tumour originates in the brain, it has not metastasized to, or spread into, the brain from another cancer elsewhere in the body.
Tumours in children are different than tumours in adults in terms of the locations that tumours appear and their behavior.
Treatments and prognosis for pediatric brain cancer vary based on the child’s age, type, grade, and location of the tumour. Response to treatment is different in children than in adults and is also influenced by the cell types of the tumour.
When reading studies and statistics, please note that brain cancers and cancers of the spinal cord are frequently grouped together as CNS (central nervous system) tumours. So, our understanding of the rate of prevalence of brain cancer (specifically) is approximate.
The Canadian Cancer Society identifies that in 2023 it is estimated that 3,200 Canadians will be diagnosed with brain and spinal cord cancer, and 2,500 Canadians will die from brain and spinal cord cancer.
Based on that estimate, it is projected that 250 Canadians, children, and adults, will be diagnosed with brain cancer on a monthly basis.
Types of Brain Tumours
Signs & Symptoms
Slow growing brain tumours can remain undetected for a long time. Some tumour symptoms are subtle to begin with and then become much more pronounced as the tumour grows.
The various parts of the brain control different functions, so symptoms of the tumour will vary depending on the tumour location, the rate of growth, and tumour size.
Arriving at a diagnosis happens differently for each patient. Some patients will have a sudden onset of very problematic symptoms and will be taken to the hospital to be seen for those issues. Other patients will have a series of symptoms and will be taken for a consult with their general physician or pediatrician. While investigating the symptoms that patients are reporting, a brain tumour may be discovered.
The following symptoms may also occur for reasons other than brain cancer. It is important to ensure your physician is aware of the health challenges your child is encountering so that they can appropriately investigate.
- There may be changes in a child’s personality including their memory, speech, understanding and emotions.
- There may be changes in vision, hearing, taste, chewing and swallowing, smell and touch.
- A child may experience challenges with breathing or issues may arise with heartbeat and blood pressure or experience seizures.
- Because of changes to pressure inside the brain, some patients may have head swelling, experience nausea, pain, and vomiting.
- Additionally, how a child moves, their balance and coordination may be altered. Their face may experience weakness and drooping or their eyes may have uncontrolled movements. There may be weakness in an arm or leg.
- A child may exhibit lethargy and drowsiness.
Diagnosis
Brain and central nervous system tumours are the most common cancer diagnosed in children from the ages of 0-14.
Most tumours are confirmed in diagnosis by their appearance on an MRI.
Diagnosing a brain tumour may include:
- a neurological exam which evaluates neurological functions including balance, hearing, vision, strength, coordination, reflexes;
- brain scans and imaging like CT or CAT Scan or MRI;
- angiogram which uses a dye to visualize the vessels in the brain with x-rays (less common if CT or MRI are available);
- a PET – positron emission tomography – which is a procedure that helps measure the activity of cells and show areas of cancer that might not be visible on a CT or MRI;
- gene testing using blood or tissue sample to look for certain changes to tumour suppressor genes;
- a biopsy – where possible – to collect tissue sample for analysis. Biopsies in children may be less common. However, the sample can help inform the treatment plan;
- sometimes other assessments are included to help rule out other conditions, for example collection of cerebrospinal fluid to test for presence of tumour cells through lumbar puncture.
Many parents and guardians receive their child’s diagnosis from a doctor at the same time that the child will first hear of it.
Parents and guardians may wish to consider how best to communicate with their child about their cancer. Some will choose to speak to their child themselves, and others will request help from the doctor or nurse. Simple and clear information, using words that the child is able to understand is the first place to start. It is important to bundle the information you share into small bits at a time.
What to Expect After Diagnosis
Before Treatment
When a diagnosis is made, the next step is to develop a care plan.
The care plan will take into account:
- The type, size, and location of the tumour
- The extent of the disease
- Whether the disease has spread
- How the particular type of tumour might respond to therapies
- The age and health of your child
- Your child’s tolerance of medications, procedures, and therapies
- New developments in treatment.
The main types of treatment include surgery, radiation, and chemotherapy. Depending on your child’s situation, steroids may be introduced to help bring down swelling in your child’s brain.
Your neurosurgeon will review surgical options, and surgery timing with you, and will determine the options on the location, size, and grade of the brain tumour.
Prior to surgery there may be a series of tests done either in hospital or at an outpatient clinic.
In addition to the standard of care (surgery, radiation, chemotherapy) patients and caregivers are encouraged to ask the care team about:
- side effects that may arise from surgery and treatment and how to best manage the side effects
- new or experimental therapies that might be available, including those that may be available prior to surgery
- clinical trials that might be available
- what to expect in follow-up care and rehabilitation.
During Treatment
The most common forms of treatment include surgery, radiation, and chemotherapy, however, there are also other forms of treatment that may be relevant:
Surgery
The aim is to remove as much of the tumour as possible without harming healthy tissue in the surrounding areas of the brain. With surgery there is always the risk of deficits occurring, some damage in the brain tissues surround the tumour. Neurosurgeons are not able to identify what deficits, if any, might surface until the patient is progressing through recovery from surgery and the deficits, if any, begin to become apparent.
Brain cancer surgery can often cause swelling in the brain. Patients are monitored closely and given treatment, usually in the form of steroids, to reduce swelling. It is common for patients to be given anti-epileptics or anti-convulsant medicine to prevent seizures.
Other post-surgical concerns, some which may become long-term difficulties, include:
- headaches
- fatigue
- weakness
- dizzy spells
- poor balance and coordination
- uncontrolled movements
- difficulty swallowing
- personality and behavior changes
- confusion
- speech problems
- seizures
- difficulty concentrating
- changes to vision
Radiation
Radiation is used to destroy remaining tumour cells that are not accessible to the neurosurgeon during surgery. The dosing and frequency of radiation, as well as the overall duration radiation treatment will be determined by the radiation oncologist and neuro-oncology care team on a per-patient basis. Younger children usually receive lower doses of radiation therapy.
Chemotherapy
Drugs used in chemotherapy for brain cancer are either:
- repurposed from existing therapies that have been approved for other medical conditions, or
- have been specifically developed to target certain forms of brain cancer.
The composition of the tumour, and the genetic mutations that may be present, will influence the degree of tumour resistance to the chemotherapy. Some chemotherapy drugs are used alone and some alongside other treatments.
Chemotherapy may be administered by IV, injection, or pill. Some are administered through the cerebrospinal fluid. Combination chemotherapy uses multiple anti-cancer drugs.
Some chemotherapies can be administered at home, some at hospital, and some at specialized medical clinics.
It is important to know that each province and territory has a different set of rules governing which chemotherapies will be covered by the public drug program, both in terms of the chemotherapy drug itself and the form of the administration. As a result, some patients and caregivers will need to pay upfront/out of pocket for chemotherapy, and others will not incur cost for the chemotherapy itself.
High-dose Chemotherapy Stem Cell Transplant
In some cases, high dose chemotherapy destroys blood-forming cells. Stem cell transplant is used to replace those cells. Immature blood cells are removed from the blood or bone marrow of a patient, frozen and stored. After a patient completes chemotherapy, the stem cells are thawed and given back to the patient through infusion.
Immunotherapy
Immunotherapy uses a person’s immune system to help fight cancer cells. The choice of immunotherapy drugs depends on the biomarkers within the tumour tissue.
Proton Therapy
Proton therapy is a precise type of radiation therapy that is able to deliver radiation to specific locations and is less damaging to surrounding brain tissue. The Ben Stelter Foundation, located in Edmonton, is working to bring proton therapy to Alberta.
Targeted Therapy
Targeted therapy uses drugs and substances to stop certain molecules from promoting the growth and spread of cancer cells.
After Treatment
Follow up care for brain cancer may be shared between your family doctor and your neurosurgeon or neurologist.
The neurosurgeon or neurologist will conduct follow up examinations and brain scans, usually MRIs. The doctor will be checking for tumour recurrence and problems that may be linked to the tumour itself or to the treatment.
It is important for patients and caregivers to let the neurosurgeon or neurologist know about any new symptoms, any side-effects of treatments you are dealing with, and how you are coping.
Physiotherapists
Physiotherapists can help create a physical exercise plan to help improve functional mobility and strength.
Physiotherapists can help create a physical exercise plan to help improve functional mobility and strength.
Speech and Language Therapists
Speech and language therapy may help patients redevelop their speech and work to alleviate swallowing problems.
Speech and language therapy may help patients redevelop their speech and work to alleviate swallowing problems.
Occupational Therapists
Occupational therapists help find ways to manage day to day life, for example, there may be specialized equipment needed in your house, or some adjustments to furniture, to help make daily tasks safer and easier for patients and caregivers.
Occupational therapists help find ways to manage day to day life, for example, there may be specialized equipment needed in your house, or some adjustments to furniture, to help make daily tasks safer and easier for patients and caregivers.
Resources
Brain Cancer Canada recognizes how demanding a diagnosis of brain cancer is for patients, families, and caregivers. There are many supports available for patients and caregivers and we hope that the resources identified are helpful in your journey.
Resources and supports are presented in two parts:
Part I: information relevant to all patients and caregivers across Canada, and
Part II: information relevant to patients and caregivers in each province and territory.
Clinical Trials and Experimental Therapies
Clinical trials and experimental therapies are available in Canada and abroad. Clinical trials test new therapies and diagnostic techniques in patients. Clinical trials attempt to determine the effectiveness and safety of a new treatment or technique.
Clinical trials come with risks, however, might be of interest if the tumour is incurable with current therapies. Some patients, with no proven treatments for their tumour, will opt to start therapy with experimental therapies.
There are eligibility criteria to participate in clinical trials or to gain access to experimental therapies. Some patients will opt to travel for experimental therapy, other patients will seek special authorization to bring an experimental treatment into Canada for their specific use. There may be high costs associated. Special authorizations require much advocacy, care-team involvement, documentation, and follow-up.
Living with Brain Cancer
Childhood cancer will bring about deep changes in the social and family fabric. Parents of a child with cancer will face tremendous change, which in turn may create profound levels of stress.
Beyond the diagnosis, waiting times for diagnoses and tests, the frequency of treatments and hospitalizations, side effects of treatments, and angst regarding the course of the cancer and recurrence all impact parent and family environments. There are changes to the social ties of the family that may occur and the diagnosis and cancer journey of the child may also impact a parent’s ability to work, therein causing changes to the family’s financial stability or security.
Parents and guardians may experience:
- shock
- denial
- depression
- heightened fright, anxiety, and/or panic
- confusion
- anger
- resentment
- guilt
- sadness
- sleep disruption
To help you manage through these feelings you might consider:
- seeking counselling to reduce stress
- setting small daily goals each day without thinking ahead too much
- if you are able, consider a gentle form of exercise like a short walk each day
- trying to eat healthily and regularly, although this may be challenging
- exploring opportunities for relaxation like meditation, visualization, and yoga
- finding ways to express yourself, listen to music, have a good cry, shout as loud as you can, draw or keep a journal, or start your own blog
- join a brain cancer patient support group
Get Involved
- Let us know of a service or support that has been helpful to you so that we can share it on our website[insert link/form]
- Make a Donation
- Start a Personal Fundraiser
- Become a Brain Cancer Canada volunteer or ambassador
- If you are a researcher, consider applying for funding from BCC