Brain tumours: more common and complex than you think
By CARL CADOGAN,
This month, 837 Canadians will hear the words, “you have a brain tumour”. And they will add their voice to the 55,000 survivors across this country who are desperate for an increase in awareness and understanding about the disease that is changing their lives.
In addition to the many other things happening this month across Canada, October is Brain Tumour Awareness Month. What does this mean? For the patients and families that I connect with every day, it means we are coming together to shout from the rooftops about the impact of the disease. We want every Canadian to know that brain tumours are not only more common than people might think, but also that they are uniquely complex making each case distinctive and challenging.
To the 27 families who today start the difficult journey of living with a brain tumour and know the impact it can have on physical ability, mental capacity and an individual’s personality, awareness is incredibly important.
It starts with sharing who is affected. This disease does not discriminate – people of all ages and backgrounds are diagnosed every day, including children. In fact, brain tumours are the leading cause of solid cancer death in children under the age of 20, now surpassing leukemia and bone cancer. On the heels of September’s Childhood Cancer Awareness Month efforts, this is particularly striking. For every parent who hears this diagnosis, their hopes and dreams for their children’s futures are changed in an instant.
But the devastating effect of brain tumours is not limited to children; brain tumours are the third leading cause of solid cancer death in adults ages 20-39. And it goes on from there, with 120 different types of brain tumours impacting patients and families of all ages.
Layered on top of the diversity of people affected are the 120 different types of brain tumours classified on the World Health Organization (WHO) grading system. This scale, as well as where the tumour is located in the brain, determines the tumour’s impact and an individual’s treatment. As a result, treatment, symptom management, care plans and long-term side effects are varied and complex.
Finally, the very fact that the tumour is found in the brain alters how we experience our day-to-day lives. Our brain is what makes us who we are. It’s what allows us to fully live life. The joys of love, the heartache of loss, the smell of a home-cooked meal, the sounds of a child’s laugh or an endorphin release from a run. Our brain does all this and more.
So when something impacts our brain, it can change any or all of these things, for the patient and for their families and friends.
For some survivors, re-learning to read or speak, or walk or drive, is something they face on their journey to wellness. For others, interpreting emotional cues from family and friends can be their biggest challenge.
“After my surgery, my behaviour changed and many friends and family members drifted away,” remembers one Ontario survivor.
We hear stories every day from survivors and families who share experiences and need support navigating their ‘new normal’.
In addition to awareness about the reach and impact of the disease, we are working on co-ordinated approaches to address the many issues associated with a brain tumour diagnosis. This collaboration is critical.
One of the issues is equal access to the best evidence-based care for all Canadians living with a brain tumour. This includes the need to overcome both financial and bureaucratic challenges to accessing all aspects of treatment and rehabilitation required for survivors to retain and regain recovery and independence.
Another issue that readers would likely be shocked to learn is that, in Canada, every brain tumour is not counted. Currently, provincial cancer registries are responsible for tracking malignant brain tumours but low-grade masses, like meningiomas, do not have a home in many provinces. As a result we do not have a complete reflection of all brain tumour patients in Canada. We can’t identify clusters, we don’t know the scope of all tumour types, and the advocacy for the best interest of the community is slowed.
The need for a standardized system to gather brain tumour statistics simply can’t wait. When every person with a brain tumour in Canada is counted and accurate Canadian data about brain tumours is available, efforts to ensure equal access to drugs, treatments and services for all brain tumour patients will accelerate.
But there is hope. More patients and families are connecting every day and leaning on each other. Research is being funded across Canada and around the world to learn more about this complex disease that takes too many lives.
I encourage you to join us in our effort to continue to provide hope to the 837 families whose lives will change not just this Brain Tumour Awareness Month, but every month of the year. Together, we can lift the burden of a brain tumour.
Carl Cadogan is the chief executive officer of Brain Tumour Foundation of Canada. For more information about brain tumours and their impact on Canadians every day visit www.braintumour.ca.