Introduction
A brain cancer diagnosis comes with new physical, practical, and emotional needs for the patient. There is frequently a change in personality and thinking.
Caregiving, the practicalities, and the emotions that come with, is made more complex and challenging on account of all of this.
When a brain cancer diagnosis is made, patients and caregivers are plunged into a daunting experience that requires a lot of decision-making. That decision-making may benefit from having access to more information.
Trying to learn about brain cancer while in the middle of the diagnosis, and/or with surgeries already occurring, is immensely challenging.
- 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.
Types of Brain Tumours
The World Health Organization (WHO) classifies brain tumours to differentiate between the most benign tumours (grade I) to the most malignant tumours (grade IV).
Primary malignant brain tumours include meningiomas and gliomas.
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, symptoms of the tumour will vary depending on the tumour location, the rate of growth, and tumour size.
Fast or slow growing brain tumours can be pronounced by a sudden onset of problematic symptoms, like a stroke or seizure.
In other cases, the tumour may be causing a series of symptoms that warrant investigation by a general physician (GP) and while investigating the symptoms that a patients is reporting, a brain tumour may be discovered.
These symptoms may occur for reasons other than brain cancer, however, are sometimes symptoms of brain cancer:
- Headaches that become more severe
- Pressure in the head that is worse in the morning
- Seizures and convulsions
- Difficulty speaking or finding words
- Personality or behavior changes
- Numbness or paralysis on one side of the body
- Losing feeling and movement in an arm or leg
- Loss of balance, dizziness, unsteadiness
- Loss of coordination, difficulty with walking and movement
- Slurred speech
- Feeling very tired
- Feeling very hungry and gaining weight
- Ringing in the ear or loss of hearing
- Facial numbness or tingling
- Vision changes like losing sight on the sides of your vision
- Phantosmia (olfactory hallucinations – smelling things that aren’t there)
- Seeing or tasting something that isn’t there
- Confusion with everyday things and disorientation
- Memory loss
- Nausea or vomiting
Diagnosis
Arriving at a diagnosis happens differently for each patient.
Diagnosing a brain tumour typically includes:
- a neurological exam which evaluates neurological functions including balance, hearing, vision, reflexes;
- brain scans and imaging like CT or CAT Scan or MRI
- a biopsy – where possible – to collect tissue sample for analysis.
Sometimes other assessments are included to help rule out other conditions, for example:
- EEG (electroencephalography) to measure the electrical activity in the brain.
- Neurocognitive assessment to determine changes to cognition.
- Endocrinological assessment to determine hormone function.
- Collection of cerebrospinal fluid to test for presence of tumour cells through lumbar puncture.
What to Expect After Diagnosis
Before Treatment
The current standard of care for most malignant brain tumours includes surgery to remove as much of the tumour as possible, followed by radiation and chemotherapy.
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;
- special tests like biopsies, genetic sequencing, and the like;
- special access programs to drugs or therapies that are not yet reimbursed through provincial drug programs;
- clinical trials that they may enrol in;
- what to expect in follow-up care and accessing follow-up scans (following surgery, radiation, and chemotherapy) and rehabilitation as in-patient or in community.
During Treatment
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.
In some cases, following surgery, patients may need rehabilitation support to re-learn to speak, sit, eat, stand, and walk. Some patients and their caregivers will also benefit from mobility support devices, for example, walkers.
Other post-surgical concerns, some which may become long-term difficulties, include:
- headaches
- fatigue
- weakness
- dizzy spells
- poor balance and coordination
- personality and behavior changes
- confusion
- difficulty concentrating
- challenges with sequencing of tasks
- problems with speech
- seizures
- strokes
- blurred or deficits in vision
Radiation
Radiation is used to destroy remaining tumour cells that are not accessible to the neurosurgeon during surgery. Depending on each patient case, radiation is frequently coupled with chemotherapy and begins 3-6 weeks following 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.
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 patient’s 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.
Chemotherapies are administered in different forms, and some forms may have reimbursement, while others do not. The different modes of administration include: intravenous (needle inserted into vein, or IV), injection, or pill.
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.
Tumour Treating Fields
Tumour treating fields use painless electrical pulses to interrupt tumour cell growth and spread. The device is portable and consists of adhesive patches worn on the scalp and connected to a small backpack. The device side effects may include scalp irritation and requires frequent head shaving. This device received Health Canada approval and a positive reimbursement recommendation from Canada Drug Agency. Provincial drug and health programs have yet to make the device available to patients. It is encouraged that patients and caregivers inquire with their care team about gaining access to this therapy.
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.
For example:
pressure-mounted poles with handles to help patients stand up/sit down
pressure-mounted poles to help patients in and out of showers
grab bars that are installed in locations around the house that provide added support while the patient is moving about
wheelchairs, walkers, and wheeled commodes
other items that provide added support to 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
Finding out that you or a loved one has brain cancer is overwhelming. Every patient and caregiver will encounter different feelings and these feelings will ebb and flow each day. You may have feelings of:
- shock
- denial
- depression
- heightened fright, anxiety, and/or panic
- confusion
- anger
- resentment
- guilt
- sadness
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
- remind yourself that feeling better will take time and happen gradually
- 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 with side effects of treatment
- 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
- remind yourself that while you may want to join your friends and family in activities, sometimes you might not feel up to it, and that’s ok, do as much as you feel like doing and then be sure to get the rest you need
Additionally, you may experience sleep disruption. You may want to try:
- going to bed and getting up at the same time each day
- cutting down on napping during the day, although side-effects of treatment may mean you need more rest
- try to sleep in a room that helps keep you calm
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