diagnosed with glioblastoma at 47: 'a brain cancer diagnosis can bankrupt families'
adam fanaki lived with aggressive brain cancer for three and a half years, surpassing the typical 15 to 18 month survival rate.
7 minute read
adam fanaki's children were 14 and 16 years old when their dad adam was diagnosed with glioblastoma. supplied
in 2016, adam fanaki, a respected toronto lawyer who regularly reviewed lengthy documents, suddenly found himself unable to retain and recall information. he worked long hours and at first, both he and his wife janet, wondered whether exhaustion had something to do with it, but after consulting his gp, he was told that he may have suffered a mild stroke.
without any tests, the doctor prescribed a low-dose aspirin, but when janet went to fill the prescription, she had a feeling that something wasn’t quite right. adam also had reservations. he went to the hospital where a doctor ordered a ct scan, which showed that something else was going on. he was immediately sent for mri, and that same day, at 47, he was diagnosed with glioblastoma — an aggressive and deadly brain cancer.
“we were in complete disbelief,” says fanaki. “adam was healthy, never took any medication, he exercised and led a normal life. it was an out-of-body experience, and you go through a moment where you ask, ‘why is this happening to us?’”
to treat the cancer, adam underwent surgery, chemotherapy and radiation, and through it all, he maintained his mental capacity until about a month before he passed away from the disease.
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patients do better than they did 20 years ago
according to brain cancer canada, there are 120 types of brain tumours and one-third of them are malignant. each year, an estimated 3,000 canadians are diagnosed with brain cancer, and while not all tumours are cancerous, an average life expectancy for someone with glioblastoma is 15 to 18 months. but there are exceptions.
dr. sunit das, associate professor of neurosurgery at the university of toronto, neurosurgeon at st. michael’s hospital, and provincial lead for cns oncology at cancer care ontario, says some people beat the survival odds, thanks to research advances.
“treatments that we have are meaningful and our patients do better than they did 20 years ago,” he says. “currently, nearly 10 per cent of patients survive more than five years, which is tremendous.”
while at the diagnosis stage, it may be difficult to predict which patient might live beyond 18 months, some studies suggest that genes and race may play a role in disease outcomes. researchers have determined that higher expression values of five key genes could help to control the disease longer, and that black glioblastoma patients may experience prolonged survival.
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and though these factors may impact disease trajectory, the standard of care for glioblastoma is well-defined, consisting of surgery, radiation and chemotherapy, with surgery considered the most intensive of all. treatment has come a long way, but it is not without limitations and side effects.
for most people who undergo the operation — roughly 75 to 90 per cent of patients — the tumour returns in 10 months or less. those who are treated with radiation may experience side effects such as headaches, nausea, hearing loss, seizures and memory problems, and those receiving chemotherapy may also experience increased bleeding, mouth sores and fatigue. das says that while treatments for glioblastoma aren’t curative, they can help control the disease and give a patient a better quality of life and more time. in his career to date, all of his patients, except for one, have proceeded with treatment.
adam fanaki with his wife janet and their children isobel and adam in japan. supplied
the cause of glioblastoma is unknown
the cause of glioblastoma is still unknown, but some experts say that advanced age may be a risk factor. das however, who treated adam, says that young, healthy and vibrant patients are also getting diagnosed with the aggressive disease, adding that “sometimes, it’s hard to make sense of that.”
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exposure to radiation may also increase risk, and there is evidence suggesting that some rare hereditary diseases as well as exposure to synthetic rubber manufacturing, living in close proximity to an oil refinery, exposure to vinyl chloride or pesticides could also increase risk, although some people with exposure to known risk factors may never develop the disease. das says that glioblastoma can strike anyone and while it may stay dormant for more than a decade, once the first symptoms appear, such as headaches, confusion and memory loss, it may evolve rapidly.
“glioblastoma is a human disease,” he says. “the remarkable thing about a human brain is its ability to continually change and recreate itself, and it’s in that property that there is an intrinsic risk of this disease developing.”
marc peeters is the director of partnerships and stakeholders at brain cancer canada, a national volunteer-based organization. it has no salaried employees, it receives no government funding, and through its donors, many of whom have a personal connection to cancer, raises funds for research. roughly 85 to 95 per cent of its net proceeds are directed towards research projects with breakthrough potential that are vetted by an expert-panel scientific advisory committee.
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the organization specifically funds early-stage research, which peeters says can further our knowledge and understanding of the disease and lead to new and improved treatment options. early-stage research has paradigm-shifting, breakthrough potential, but because it is more adventurous when compared to other types of research, it isn’t funded through traditional channels.
the organization also invests in innovative technology in neurosurgical care. more recently, it has supported the purchase of the state-of-the-art cranial robotic operating platform at one toronto hospital, to assist surgical teams in brain tumour biopsy procedures. it is also funding the development of a new neuro-oncology genetic testing panel, which will be used to diagnose and treat brain tumours more rapidly as well as research that uses crispr technology to identify and turn off genes in cancer cells that lead to recurrent brain tumours. all of this in addition to funding promising research that may help eliminate barriers that get in the way of effective brain cancer treatment.
patients running out of time seek treatment outside the province
brain cancer research currently receives less than three per cent of total government funding, which according to peeters, isn’t enough to make a meaningful difference in the lives of people affected by the disease. he says that every time the organization sends out a news release announcing a new research project it’s funding, there is an influx of calls from patients’ families, inquiring whether a clinical trial is available as part of the research. patients who have tried everything and are running out of time, may seek treatment outside of their province or country, if they can afford it.
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“a brain cancer diagnosis can bankrupt families,” says peeters. “there are people that consider selling their home to help pay for a certain treatment that could extend their life.”
since her husband’s passing in february 2020, fanaki has launched the adam fanaki brain fund to help support patients and caregivers impacted by brain cancer. to date, she has raised $200,000 — a large donation was given to the brain tumor foundation of canada to help support virtual programs for glioblastoma patients and their caregivers, and to st. michael’s hospital’s compassion programs for people with a brain tumors. a former public relations professional, she has also launched the resilient people podcast — now in its third season — sharing insightful and inspiring conversations with guests who have faced difficult situations with strength and resilience.
while fanaki says that losing her husband to cancer was extremely difficult, what made things harder was the inability of others who failed to grasp the gravity of what her family was going through — her children were 16 and 14 at the time of their father’s diagnosis. some people assume that families and caregivers can go about their daily lives despite the challenges of a serious health issue, she says, when in fact, many wish to be acknowledged and supported. fanaki suggests that asking someone how they’re doing, offering to help them with a task or inviting them to go for a walk are just some of the ways to acknowledge families and caregivers who are impacted by cancer.
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she recalled a casual conversation with an elderly neighbour who at the time was in her 90s and whom she referred to as a “firecracker.”
“i know what’s going on,” the neighbour said. “you don’t have to say that everything is fine, you can say it’s f****** sh**.” fanaki says she felt seen that day.
asked what advice she would share with others, fanaki says that she believes that treatment and self-advocacy allowed her husband to live well with the disease and gave him more time with his family.
“if you have symptoms, get yourself checked out or at least raise awareness with your family doctor,” she urges. “adam advocated for himself and lived with the disease for three and a half years.”
maja begovic is a toronto-based writer.
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