Brushing off symptoms
In early 2024, Matthew Miller from New Jersey in the USA, started experiencing nausea, vomiting, headaches, and fatigue. He thought he had the flu, but when this hadn’t stopped after a week, his girlfriend, Juliette, insisted he go to urgent care.
Matthew wasn’t concerned and tested negative for various conditions. But to be safe, his physician suggested he had a CT scan. He resisted again because he didn’t want to bother ‘wasting time’ but, once more, Juliette insisted.
Matthew had a CT scan on January 24, 2024. He describes it as “the day that my life changed forever” and added:
I will never forget the look on the radiology technician’s face when she told me that I needed to stay and speak with the doctor. Soon after, the doctor told me that I had a large tumour in my brain and needed to go to the emergency room immediately. That tumour, originally believed to be benign, turned out to be a rare cancerous tumour called an astroblastoma.
Matthew Miller
Peer support for a rare diagnosis
Over the next six months, Matthew, a Product Manager working in New York City, had two craniotomies and six weeks of proton radiation therapy to his brain and spine. He arranged treatment for the early mornings so he could go back to work afterwards and tried to carry on with his life as best he could.
However, it bothered him – understandably – that there was some tumour left in his brain. Desperate to find out more about the condition, Matthew searched online for anything relevant and found a story on our website about Simrat, who had the same rare diagnosis.
He found Simrat on social media and sent her a direct message. Fast forward several weeks and he and Simrat had chatted, exchanging tips about nutrition, exercise and wellbeing.
Matthew said: “There’s not much information about astroblastoma because it’s so rare, so it was really good to find Simrat and speak to her about her experience.”
A third craniotomy
In July, Matthew was referred to Dr Daniel Orringer, a neurosurgeon at NYU Langone hospital, who had researched and developed pioneering neurosurgical technology using AI and MRI scans to distinguish between healthy and cancerous brain tissue during surgery.
On 31 July 2024, Matthew had his third craniotomy of the year – and it was a success!
Matthew said: “Dr Orringer fully removed my tumour! With astroblastoma, this significantly improves your prognosis and chances of survival, so while I’ve just finished undergoing adjuvant chemotherapy treatment, I am immensely grateful to him and the technology his lab develops for helping to give those like me another chance at life.”
Making a difference
In another twist, Matthew missed a scheduled call from a new work colleague while he was in surgery the first time. After returning to work Matthew called him back and said: “You won’t believe the reason why I missed our call.”
After telling him what happened, Matthew learned that his new work colleague had founded a charity for brain cancer research after his mother had passed away from the disease.
Matthew, who describes himself as a private person, is now opening up about his diagnosis and treatment so that he can make a difference.
He’s also determined to raise awareness of the need to fund the research and development of new brain cancer fighting technologies, and to raise awareness of Dr Orringer’s lab, which aims to break new ground with novel diagnostic approaches, innovative treatments, and cutting-edge technologies to impact the care of patients with brain and spine tumours.
Matthew said: “I’m lucky with where I live and with the health insurance I have. This whole experience has been a big lesson for me. My prognosis is unknown but when you think about it, everything in life is unknown and every day is a gift.”
Matthew is now recuperating from the effects of chemotherapy, having regular scans, and fundraising for Dr Orringer’s lab.