Woman was told she had a terminal brain tumour and underwent 11 years of torturous chemotherapy – only to find out she never had cancer in the first place

A woman who was told she had a terminal brain tumour underwent 11 years of chemotherapy – only to find out she never had cancer in the first place. 

Becky Jones was just 21, newly in love and dreaming of a career in the police when doctors told her she had an aggressive brain tumour and only months to live.

Instead of building the future she had imagined, the young woman spent the next 11 years having chemotherapy – suffering debilitating nausea, fatigue and other side effects while living with the constant fear that stopping treatment could kill her.

Now, at 34, the mother-of-two has discovered that she never had a brain tumour at all.

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.

Her extraordinary case has emerged as 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 families are now taking legal action over allegations of prolonged or unnecessary cancer treatment.

And a Royal College of Physicians review of 20 cases has found serious failures in clinical decision-making, patient consent and NHS oversight.

None of the 20 cases examined were judged to demonstrate good practice. Fifteen were considered unsatisfactory overall, while the review found repeated instances of chemotherapy being continued for years without a clear evidence base or adequate documentation explaining why it was necessary.

In some cases, patients were given more than 100 cycles of temozolomide, a chemotherapy drug normally used for high-grade brain tumours.

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.

In 2012, Becky 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.

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.