In a matter of days, Tauranga teacher Bryony Smith, 26, went from falling at hockey practice to being told she had a brain tumour.
“My world changed overnight.”
Within months, specialists flown in from Australia and a neurosurgeon were operating on her brain, and then she was relearning how to speak and use the limbs on her right side.
Now she’s joining other brain tumour and cancer patients, their loved ones and advocates in a fight for better funding, treatment, care and research.
Brain cancer kills about 278 people every year in New Zealand, about 18 of those in the Bay of Plenty. The cause of most brain tumours is unknown and there are no effective prevention measures, according to the Brain Tumour Support Trust.
Smith said she believed the tumour in her brain had been there “a long time” before it was found this year.
She had been prone to headaches, migraines and dizziness growing up, and said she was diagnosed with vertigo and tachycardia though she “never met the full symptoms of either condition”.
On April 21, the high school English teacher fell at hockey practice and was concussed. A CT scan showed a black mark on her brain.
She was admitted to Tauranga Hospital but discharged the next day after an MRI.
A phone call on April 27 from her GP asking how she was “coping with the news” was a surprise.
“[My doctor] said ‘I wasn’t prepared to be the one to tell you this, but you’ve got a brain tumour’.”
“I’m just grateful that my partner happened to be working from home that day. He sat down on the couch with me and we were both crying,” Smith said.
Telling her family and friends was one of the most difficult parts of her journey, she told the Bay of Plenty Times. She kept showing up for her students, even as she struggled to process the news.
A neurosurgeon told her the operation would require “fancy” equipment and neuromonitoring specialists from Australia because the tumour was so close to the neuro connections that controlled the right half of her body.
“I was nervous about brain surgery … I live in my head”.
On June 19, Smith had private brain surgery at the Southern Cross Hamilton Hospital.
After surgery, Smith was told she had a rare type of brain cancer called Oligodendroglioma, and the tumour was stage 2.
The surgeons had only been able to remove 90 per cent of it without causing permanent disability.
Over seven weeks, Smith had to relearn how to talk and use her right limbs, and has since been able to return to her teaching career.
She said the remaining 10 per cent of the tumour would continue to grow inside her brain.
She would have an MRI scan every three months to monitor tumour growth. Doctors cannot currently give Smith a long-term survival prognosis.
Smith said she was lucky to be able to afford health insurance plan, which paid for the surgery and could also help with chemotherapy if needed one day.
“But for many people in our community, it’s not the reality for those that have to fork out hundreds of thousands of dollars for that level of care.”
She was grateful to have been able to return to work, as this was not the case for many in the brain tumour community.
Being able to raise funds to help others was one of her reasons for getting involved in the recent International Brain Tumour Awareness Week.
She completed a fundraising run and walk of just over 6.5km, and her Givealittle page remains open.
Amy Stewart’s husband, Brendon Stewart, died in 2021 from Glioblastoma, a fast-growing and aggressive brain tumour.
The Tauranga man had been fit and healthy before the diagnosis, enjoying skiing, golfing and the outdoors.
He was descending Mauao with a friend when he sensed a “toxic smell” followed by a “tingling” sensation down his left side, Stewart said.
It happened again that afternoon and his speech became slurred, so she called an ambulance.
Three days after CT scans at the emergency department (and later an MRI), Brendon was told he had stage 4 Glioblastoma.
“It was the worst of the worst.”
Stewart said he was “determined to beat this thing” and he was generally “himself” in the nine weeks that followed, but three days after receiving chemotherapy and radiation treatment, his health declined rapidly.
”In his case, they sort of describe it like a cobweb, it sort of infiltrates the brain and covers everything.”
Stewart said when a diagnosis was “in front of your face” it was easy to see the desperate need for better funding and research about brain cancer.
“When these things happen and this sort of diagnosis on the door, you see things very differently.”
Brain Tumour Support Trust chairman Chris Tse, whose wife Lynda is a long-term survivor of Glioblastoma, said brain tumours did not depend on the health of a patient.
“Unfortunately government initiatives often focus on prevention of cancers over treatment [for example] reduce sun exposure, quit smoking, eat healthily.”
He said when funding for these types of initiatives was announced, there was a collective “sigh” from the brain tumour community because “we know they are not going to be particularly relevant to us”.
Tse said “more research into new and innovative treatments” and the causes of brain tumours was much-needed.
“Without research patient outcomes won’t improve,” Tse said.
Tse said the occurrence and mortality of brain tumours was under-reported in New Zealand.
The Cancer Registry does not count benign (non-malignant) primary brain tumours or stage 2 metastatic brain tumours.
Tse said about 70 per cent of all primary brain tumours were non-malignant and the lack of an up-to-date national registry had “important implications for patients”.
Smith said she was initially told she had a “low-grade” tumour and she found it difficult to access support.
Learning later she had cancer was a shock, but finding support became easier.
“There’s not nearly as much infrastructure to support people with brain [tumours] when it’s not cancer, but it’s not something that should be there either.
“That can be quite isolating,” Smith said.
Te Whatu Ora-Health NZ interim chief clinical officer Dr Richard Sullivan said benign (non-harmful) brain tumours were not registered as “they are not within the scope of the legislation that supports the Cancer Registry”.
Malignant cancers were registered by where the cancer originates.
“The data we hold does not allow us to identify cancer(s) which started in other organs but metastasized/spread to the brain unless the primary site is unknown.”
Primary malignant diseases diagnosed in New Zealand were added to the registry, but secondary brain tumours were “only registered if the primary site of the cancer from which the secondary brain cancer arose cannot be identified”.
Sullivan said in 2018 there were 314 deaths due to malignant brain cancer, the most recent published data.
Michaela Pointon is an NZME reporter based in the Bay of Plenty and was formerly a feature writer.
Clarification
Amendments have been made to the portion of this story about Amy and Brendon Stewart to clarify some points and add additional context. These include changes to the descriptions of when Brendon first noticed symptoms, the diagnosis process, and his condition in the last weeks of his life.