Timberlea woman calls for national brain tumour registry

HALIFAX – A Timberlea, N.S. woman is adding her voice to a call on the provincial and federal governments to create a national registry for brain tumours.

Kelly Marshall, 41, had her world turned upside down in October 2012 when she was diagnosed with a grade one, benign meningioma — a tumour that comes from the membranes surrounding the brain and spinal cord.

Marshall said the first sign something was wrong was when she felt shocks to her face.

A trip to the dentist led to a trip to her family doctor, who told her she had to see a neurologist.

Last October, the results of an MRI came back: Marshall, a mother of two, had a brain tumour.

“It came out of the blue. It was not what I was expecting,” she said.

Marshall said the diagnosis was particularly hard to swallow because she knew two people who had brain tumours and neither of them survived.

“To me, I didn’t know that people could survive having a brain tumour,” she said.

The Brain Tumour Foundation of Canada estimates that 27 Canadians are diagnosed with a brain tumour every day and there are 55,000 Canadians currently living with a brain tumour.

Marshall found herself in a trying situation.

“I was feeling anxious. I was also not feeling well. I had been having low blood pressure, balance issues, migraines with loss of vision.”

Her partner Todd Mulyk said the family is trying to stay optimistic but remains watchful of Marshall.

“We have a brain tumour with Kelly. We have to take a little bit more time with certain things. We’re always on watch. She has some balance issues, some sight issues,” he said.

“Life continues to go on but we recognize when Kelly’s tired, she’s tired and she’s done for the day. Everybody pitches in just a little bit more.”

Marshall admits she was scared and frustrated by the unexpected diagnosis.

“I have more than half of my life yet to live. I’m scared. I’m still scared,” she said.

Marshall immediately saw a neurologist and neurosurgeon and in January, a portion of the tumour was removed.

However, doctors could not safely remove the whole thing. Marshall said that they believe radiation is now her best option.

While she waits for more appointments next month, Marshall is focusing her efforts on raising awareness about the lack of a national registry for brain tumours.

“Why is my brain tumour not counted? How do we expect to get proper funding through research if we don’t even account for them?”

Megan Winkler, the manager of marketing for the Brain Tumour Foundation of Canada, said that data about brain tumours is right now extrapolated from statistics in the United States.

“We need to know how many people are affected by the disease so that we can figure out better ways to treat brain tumours,” Winkler said.

The Canadian Cancer Registry currently collects information on cancer incidence, or malignant tumours, from all the different provinces and territories.

However, Winkler said detailed information needs to be collected about patients with benign tumours.

Winkler said a national registry would allow provincial and territorial governments to better track and monitor patients with brain tumours, determine how many people are affected and by what type of brain tumour and it would allow for more research.

“Basic understanding of the population and incidence rates is really a baseline for all research. If we don’t even have that information, it’s hard to even start to attract researchers,” she said.

Marshall, and the foundation, are urging residents to send letters to their elected officials this month, which is brain tumour awareness month.

This is the first time that the foundation has embarked on this type of campaign and its goal is to send 837 letters, approximately the number of people that will be diagnosed with a brain tumour this month.