what it feels like: 'i live in the moment' after breakthrough treatment for brain cancer
7 minute read
steven stefanidis, 36, was diagnosed with a glioma brain tumour in the prime of his life.
steven stefanidis
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steven stefanidis, a firefighter by trade, was responding to a medical call when he had his first partial seizure. he and his colleagues were forced to pull over, and steven “immediately switched roles,” becoming the patient as opposed to the first responder he had been up to that point.
that night, he was sent to the hospital, where he got an mri workup to assess why the seizure happened, and that’s when doctors saw it: a tumour the size of an orange lodged in steven’s brain.
“there wasn’t much information given on exactly what they thought the mass was because it was just an image showing a mass,” steven said.
the following day, steven was sent to st. michael’s hospital in toronto, on, to meet with a neurosurgeon to get more information on what was growing inside his brain.
as it turned out, steven had a glioma, a type of primary brain tumour that begins to form in the glial cells of the brain.
“i just couldn’t believe it at first. it was a lot of information to digest,” he said.
these tumours are the second-most common type of cancer found in canadians under the age of 40, and steven joined the community of those who develop it at just 36 years old.
according to his neurosurgeon, dr. sunit das, the outlook for steven was favourable, and a week after he found out he had the glioma, he was booked for neurosurgery to have it removed.
being diagnosed with brain cancer at 36
before steven was diagnosed, he lived like any other 36 year old. he worked at a job he loved, cared for his health through regular exercise and gym sessions, and spent as much time as possible on his hobbies, including fishing and being outdoors.
his life had just begun, and when the diagnosis came, he had to recalibrate his life to a degree that young people often aren’t ready for.
“i felt like i was at the beginning of the peak of my life. i had started my career. i was on the path to potentially having a family, and then all of a sudden, this like speed bump just kind of hit the road, and it affected a lot of areas in my life,” he said.
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in the time between his diagnosis and his surgery, steven did what anyone would do in that situation: he researched as much as he possibly could about his condition to try to understand what it meant for the rest of his life.
unfortunately, the internet isn’t always reliable when it comes to health content, and his findings did not paint a positive picture.
“when diagnosed, i spent time researching the illness and the internet is filled with outdated information, which made the future look bleak,” he said.
luckily for steven, his treatment moved fast, and while it was overwhelming and scary, he did have a strong medical provider that he could put all his “faith and respect” into.
“they kept me very calm, especially my surgeon,” he said. “when it came to our in-person meeting, he was very calm, and that also strengthened my perspective as well as how positive the outcome would be.”
steven recalls dealing with the entire ordeal well because of the strengths of his medical team, and when surgery was over, all that was left to do was focus on getting back on his feet.
recovering from brain surgery
steven spent three days in the hospital after his brain surgery. he was told that roughly 90 per cent of it had been removed, but due to its attachment to the brain, they could not remove the entire thing.
“there’s no way to remove the malignant tissue and not damage the healthy tissue because they’re literally attached,” he said. “so, luckily, we were able to remove more than expected.”
when he arrived home, he finally had time to sit with the emotions of his fast-tracked whirlwind experience while allowing his physical body to heal from such an invasive procedure.
he recalls looking in the mirror at the incision and staples that remained, which he said healed “pretty quickly.”
“i was actually surprised how quickly it healed,” he said. but even with the fast healing and even faster treatment, the entire experience still “didn’t feel real.”
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during the recovery process, steven has also had to have regular mris to monitor the tumour growth. if it were to begin progressing again, more treatments would be needed to ensure it doesn’t progress into a more aggressive form of brain cancer, as gliomas often do.
the treatments that were at his disposal were chemotherapy and radiation, both of which he opted out of because of the results of his monthly scans.
when the chance to try out a newly approved oral drug designed to shrink tumours came around, steven jumped at the opportunity.
accessing a breakthrough treatment through a clinical trial
since steven didn’t go through radiation or chemotherapy to shrink the rest of the tumour, he qualified to be a part of a clinical trial aiming to show the effects of a new advancement in the form of brain cancer treatment.
the drug, voranigo, is an oral therapy for brain cancer designed to delay tumour progression to prevent the need for more aggressive interventions. it was approved by health canada in october 2024 for treatment in adults and children over the age of 12, following surgery.
it was developed to address critical concerns about low-grade glioma tumours that progress to more dangerous forms. grade-2 idh-mutant gliomas are the most likely to proliferate, leaving very little in the way of intervention for those who have the genetic mutation and develop gliomas.
“patients living with grade 2 idh-mutant gliomas must contend with a grim prognosis that has few options outside of surgery. this is a devastating diagnosis, particularly for individuals in their 30s and 40s who are often raising families and at the peak of their careers,” said lucie rousseau, general manager of servier canada, in a press release.
it is the hope that the new targeted therapy will provide families with a better outlook and more positive outcomes if they develop these types of cancer.
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“this therapy represents a significant advancement in the treatment of grade 2 idh-mutant glioma,” says dr. mary jane lim-fat, neuro-oncologist at sunnybrook health sciences centre, in a press release. “slowing tumour progression and delaying the emergence of high-grade disease are key goals in glioma treatment, and this therapy helps to address those challenges.”
before it was approved, steven was told about the trial and went through the process of being accepted.
“i had made the cutoff because for that specific clinical trial, you had to have waited one year after surgery with no other treatment,” he said. “so, you couldn’t have been exposed to chemo or radiation. so, for me, i wasn’t exposed to any other treatments, but because we were doing mris on the brain every three months just to see if there was any regrowth or stability (and) it was relatively stable. i managed to qualify just before the study had closed.”
the study began as a double-blind, placebo-controlled study. soon after, the data found a significant improvement in progression-free survival in patients compared to a placebo group. once that happened, according to steven, they had to unblind the study.
in steven’s case, he started on the placebo, but once the results began to show promise, he was switched to the drug.
“i converted over to the effective medicine,” he said. “i think it was the first or second mri. the doctors actually brought me some results and had compared the baseline to the latest mri scan and they did show some shrinkage in specific areas.”
getting his life back
now that steven has gone through diagnosis, treatments, and recovery, he has begun looking at life through a different lens. he still has to contend with regular check-ups because while the drug is a viable intervention, it is not a cure.
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“still in the back of my mind, i carry that illness with me,” he said. “so, the anxiety does kick in a little bit because you want to, obviously, hope for the best but prepare for the worst.”
even with the even-keeled approach, steven has been able to take his experience with brain cancer and allow it to shape his views of his life and the world around him in a positive way.
“it’s made me value life differently. it’s made some changes in my perspective in life,” he said. “i kind of live in the moment now rather than worrying too much about the future and even focusing on the past.”
more recently, steven has been able to travel with the medication by his side, helping him return to a new normal of living with brain cancer. and he hasn’t stopped there. he has also started planning more trips, like another family trip to greece, and getting back to “complete normalcy.”
“being part of the clinical trial exposed me to a more positive outlook and up-to-date information. personally, i feel like having a positive mindset and not letting the illness define me created a better life for me both mentally and physically.”
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