I Thought It Was Nothing – Then Came the Worst Cancer Diagnosis Imaginable

When 57-year-old Costas Fantis, a chip shop owner from Stoke-on-Trent, began noticing a sweet caramel scent once a month, he didn’t think much of it. Fit, active, and with no other symptoms, Costas chalked it up to something minor—possibly linked to childhood epilepsy. But that odd, recurring smell turned out to be a warning sign of something far more serious: stage 4 glioblastoma, the most aggressive form of brain cancer.

His only symptom? A sudden, unexplained smell.

This real-life case highlights the silent and unpredictable nature of glioblastoma, a disease that often goes unnoticed until it’s dangerously advanced. It also underscores how unusual neurological symptoms—no matter how subtle—should never be ignored.

What Is Glioblastoma?

Glioblastoma multiforme (GBM) is the most common and deadliest form of brain cancer in adults. It is classified as a grade 4 astrocytoma, meaning it is highly malignant and fast-growing. GBM affects approximately:

• 3,000 people annually in the UK
• 12,000 people annually in the US

The tumour infiltrates the brain rapidly and is often inoperable, as it spreads into healthy tissue. The average survival rate is 12–18 months, and only 5% of patients live longer than 5 years.

The Caramel-Smell Symptom: A Mini-Seizure?

In Costas’ case, the strange smell of caramel turned out to be what neurologists call an olfactory hallucination or phantosmia. These are often signs of focal (partial) seizures, especially when they originate in the temporal lobe, the brain region responsible for processing smells and memory.

“They define them as mini-seizures,” said Costas’ son, Antonio. “They last seconds, nothing happens to you whilst you do it.”

While rare, such symptoms can be the earliest indicator of a brain tumour, especially when no other signs are present.

Standard Treatment Options for Glioblastoma

1. Surgery

Most GBM patients undergo surgery to remove as much of the tumour as possible. However, in Costas’ case, the tumour was deemed inoperable due to its location and spread.

2. Radiotherapy

Usually administered daily over six weeks, radiotherapy aims to destroy remaining cancer cells. Costas has completed this treatment via the NHS.

3. Chemotherapy

The common drug used is temozolomide, often in combination with radiation. It may slow tumour progression but is rarely curative.

Unfortunately, these treatments haven’t significantly advanced in decades, a reality that left the Fantis family shocked—and searching for alternatives abroad.

Why Are Treatment Options So Limited?

Glioblastomas are notoriously difficult to treat because:

• They are highly invasive, spreading into healthy brain tissue
• The blood-brain barrier limits the effectiveness of many drugs
• The tumour often becomes resistant to radiation and chemotherapy

The cancer can double in size within seven weeks, making timely, aggressive intervention essential. For comparison, many fast-growing lung cancers take twice as long to double.

The Push for Alternative Therapies

Frustrated by the lack of treatment options in the UK, Costas’ family is now fundraising for alternative treatment in Germany, where more experimental options may be available. These may include:

• Immunotherapy
• Tumour-treating fields (TTF)
• Personalised vaccine treatments
• Precision medicine based on genetic profiling

The family hopes international care may offer a better chance at extending quality of life.

Famous Cases: A Wake-Up Call

Costas’ story isn’t isolated. Glioblastoma has also affected:

• Tom Parker, singer from The Wanted, who died in 2022 after an 18-month fight
• Dame Tessa Jowell, Labour politician, who passed away in 2018
  Both advocated for more funding and research, echoing the Fantis family’s concerns.

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