A woman diagnosed with a terminal brain tumour endured 11 years of chemotherapy, only to learn that she had never had cancer.
Becky Jones was 21, newly in love and hoping to join the police when doctors told her she had an aggressive brain tumour and just months to live.
The diagnosis derailed the future she had imagined. For the next 11 years, she underwent chemotherapy, enduring debilitating nausea, exhaustion and other side effects while fearing that stopping treatment could cost her life.
Now 34 and a mother of two, Jones has discovered that she did not have a brain tumour at all.
Independent experts instructed on her behalf concluded that her symptoms were caused instead by tumefactive demyelination, an inflammatory brain condition that can be treated with steroids.
Her extraordinary case is part of a wider scandal involving patients treated at University Hospitals Coventry and Warwickshire NHS Trust under retired consultant neuro-oncologist Professor Ian Brown.
More than 40 patients and their families are now pursuing legal action over allegations that some were subjected to prolonged or unnecessary cancer treatment.
A Royal College of Physicians review of 20 cases also identified serious shortcomings in clinical decision-making, patient consent and NHS oversight.
None of the cases reviewed was found to demonstrate good practice. Fifteen were rated unsatisfactory overall, while the report identified repeated instances in which chemotherapy continued for years without a clear evidence base or sufficient documentation to explain why it was needed.
In some cases, patients received more than 100 cycles of temozolomide, a chemotherapy drug typically used to treat high-grade brain tumours.
Becky Jones was 21, newly in love and hoping to join the police when doctors told her she had an aggressive brain tumour and only months to live.
The diagnosis disrupted her plans as she spent 11 years undergoing chemotherapy, suffering debilitating nausea, fatigue and other side effects while fearing that stopping treatment could be fatal.
The review also raised concerns that patients were not properly warned about the risks of continuing treatment for prolonged periods and that systems designed to challenge unusual prescribing had failed.
For Becky, the consequences began in 2012, when she was working as a CCTV operator at Coventry City football stadium and had recently met her partner Pete, who worked there as a steward.
But severe migraines prompted medical investigations, with scans revealing a lesion on her brain.
She underwent a biopsy and was subsequently treated as though she had a grade-four glioblastoma – one of the most aggressive forms of brain cancer.
According to her lawyers, however, the diagnosis was made before the biopsy results had returned.
Becky was told she could have only six to 12 months to live without treatment and was put on temozolomide.
What followed was more than a decade of chemotherapy.
Although national guidance generally envisages a limited course of temozolomide following treatment for high-grade brain tumours, Becky says she was told she would need to remain on the drug indefinitely.
She continued receiving treatment month after month, even as repeated scans failed to show the progression she had feared.
She suffered nausea, stomach pain, mouth ulcers and profound tiredness and became increasingly isolated because of concerns about infection.
Her driving licence was initially removed and later restricted, while activities she had once enjoyed – going to the gym, running and eating out with her partner – became difficult or impossible.
She was also warned that she might never be able to have children.
In spite of that, Becky went on to have two children, with doctors describing both pregnancies as extraordinary.
Her chemotherapy finally stopped in 2024, when a doctor contacted her and told her that treatment was being discontinued following Professor Brown’s retirement.
She says she was given little explanation and did not initially know who would take responsibility for her care.
Independent experts instructed on her behalf concluded that she had instead been suffering from tumefactive demyelination, an inflammatory condition affecting the brain which can be treated with steroids
For Becky, the consequences began in 2012, when she was working as a CCTV operator at Coventry City football stadium and had recently met her partner Pete, who worked there as a steward
The following year, independent neurosurgeons and radiologists reviewing her case reached the conclusion that transformed her understanding of the previous 13 years.
The lesion had not been cancer.
Instead, experts believed it was tumefactive demyelination – an inflammatory process that can mimic a brain tumour on scans.
Becky was told the news during a video call with her solicitors and medical experts.
The revelation came as a devastating shock after more than a decade spent believing she was fighting terminal cancer.
She later described the years of treatment bluntly: ‘I was told time and time again without the chemotherapy I would die.’
She said discovering the truth had left her struggling to comprehend what had happened to the years she had spent undergoing treatment.
‘I never had a brain tumour. I was misdiagnosed and I’ve gone through all this treatment for the main part of my adult life, for no reason,’ she said.
And reflecting on the impact of the diagnosis and treatment, she added: ‘He’s just ruined my life, essentially.’
Her case is now being considered alongside dozens of others.
The Royal College of Physicians reviewed patients who received more than 12 cycles of temozolomide at the trust between 2017 and 2023.
Reviewers identified prolonged chemotherapy in circumstances where there was little evidence of benefit, inadequate records explaining why treatment was being continued and insufficient consideration of recognised clinical guidance.
They also questioned why hospital pharmacy and oncology teams had not challenged cases in which patients were receiving oral chemotherapy continuously for 10 or 15 years.
The review concluded that the governance arrangements intended to provide oversight had been ineffective and highlighted what it called a ‘bystander effect’, with responsibility for challenging unusual practice apparently being passed between individuals or departments.
It also recommended that the trust consider referring Professor Brown’s conduct to the General Medical Council.
The latest findings have intensified questions over how such treatment could continue for so long without being stopped.
Lawyers representing the patients say the 20 cases examined by the RCP may represent only a fraction of those affected.
The review has recommended that living patients who received extended temozolomide beyond 12 cycles should be assessed, with consideration also given to patients who have since died.
The scandal has already led to further investigations, while the NHS trust has said it has introduced stronger oversight of the prescribing and use of temozolomide.
University Hospitals Coventry and Warwickshire NHS Trust has said that affected patients have been reviewed by senior clinicians and appropriate care plans put in place.
It has also commissioned an independent examination of its processes for allowing staff to raise concerns, while saying that patient safety and wellbeing remain its priorities.
