I thought I just had a headache – but doctors say I’ve only got 12 months to live: Agony of father, 45, diagnosed with terminal brain cancer

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A father has been heartbreakingly given 12 months to live after a ‘stabbing pain’ in his head ended up being brain cancer. 

Mark Downey, 45, was struck with an excruciating headache while driving with his family to a holiday in Wales in September 2023. 

The HGV driver, from Bolton, went to A&E after painkillers were not helping but left after he faced a 17-hour wait to see a doctor. 

After visiting his GP at home, who referred him for an MRI scan, he was eventually diagnosed with glioblastoma, a type of fast-growing brain tumour that can carry a life expectancy of just 12 to 18 months from diagnosis.

Feeling ‘too strong’ to give up, Mr Downey and his partner of 23 years, Samantha Scott, 39, are now raising money to fund private treatment. 

Mark Downey, 45, from Bolton, Manchester, pictured with his partner Samantha Scott, 39, was struck with an excruciating headache while driving with his family to a holiday in Wales in September 2023

Two days before their family holiday to Kinmel Bay in North Wales, Mr Downey had noticed he had a headache but didn’t think much of it. 

He knew something wasn’t right when he experienced a ‘stabbing pain’ in the right side of his head while driving his family to Wales. 

‘The pain in my head was so sharp I tried to pull my head the other way because it felt like something was banging into it,’ he said. 

‘I took painkiller after painkiller and the headache just did not go.’

The pain was so excruciating that it made the father-of-three sick. 

Brain tumours can trigger personality changes, especially if it is located in the frontal lobe of the brain, which regulates personality and emotions. It can also cause communication problems, seizures and fatigue

Brain tumours can trigger personality changes, especially if it is located in the frontal lobe of the brain, which regulates personality and emotions. It can also cause communication problems, seizures and fatigue

Mr Downey was eventually diagnosed with glioblastoma, a type of fast-growing brain tumour that can carry a life expectancy of just 12 to 18 months from diagnosis and a biopsy revealed his tumour was 2.5cm wide

Mr Downey was eventually diagnosed with glioblastoma, a type of fast-growing brain tumour that can carry a life expectancy of just 12 to 18 months from diagnosis and a biopsy revealed his tumour was 2.5cm wide

On the first day of the family’s trip, he called 111 and was told to go to A&E. 

But once in hospital Mr Downey was told it would be a 17 hour wait to see a doctor.

Mr Downey and Ms Scott decided to take the risk and drive home, with their son set to start secondary school that Monday. 

The next day on September 4, he went to see his GP and he was sent straightaway for a brain scan at the Bolton Royal Hospital, which showed he had a bleed on the brain. 

WHAT IS A GLIOBLASTOMA?

Glioblastomas are the most common cancerous brain tumours in adults.

They are fast growing and likely to spread. 

Glioblastomas’ cause is unknown but may be related to a sufferer’s genes if mutations result in cells growing uncontrollably, forming a tumour.

Treatment is usually surgery to remove as much of the tumour as possible, followed by a combination of radio- and chemotherapy (chemoradiation).

It can be difficult to remove all of the growth as glioblastomas have tendrils that extend to other regions of the brain. These are targeted via chemoradiation. 

Glioblastomas are often resistant to treatment as they are usually made up of different types of cells. Therefore, medication will kill off some cells and not others. 

The average survival time is between 12 and 18 months.

Source: The Brain Tumour Charity

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The following day he had an MRI which revealed he had a brain tumour. 

Doctors initially didn’t realise how severe it was and thought it was a stage two brain tumour, Mr Downey claims. 

But following an operation over a month later on October 21 at Salford Royal Hospital, a biopsy showed the tumour was already 2.5cm and he was diagnosed with a stage-four glioblastoma. 

Around 2,500 Brits and 12,000 Americans are diagnosed with a glioblastoma every year.

Headaches, seizures, nausea, drowsiness, vision problems and personality changes are key symptoms. 

These are caused by the tumour increasing pressure inside the skull as it grows. 

Surgery, radiotherapy and chemotherapy are go-to treatments. 

There can be a life expectancy of just 12 to 18 months from glioblastoma diagnosis and in many cases it comes back, even after being treated, according to The Brain Tumour Charity. 

Mr Downey had 30 rounds of concurrent chemo-radiotherapy alongside oral chemo from October 27 to December 23, but the tumour grew back to 1.4cm. 

In effort to shrink it further, in January he started oral chemotherapy for one week a month for a period of six months.  

Ms Scott, a sales assistant, fears it is ‘incurable’ and says ‘nothing can be done’. 

‘Doctors say the only option is another shot at radiotherapy and chemotherapy through the NHS ,’ she added.

‘I don’t want to be left to become too fragile when there could still be something that I could do.

‘I am too strong and too well to even dream of giving up.’

Mr Downey’s family set up a GoFundMe page to raise money for alternative treatments, including immunotherapy, which is not available on the NHS. 

Immunotherapy works by stimulating the body’s natural immune system to destroy cancer cells. 

Mr Downey, pictured with his partner Ms Scott and two sons Lucas Downey, 19 and Taylor Downey 12, say he is 'too strong and too well to even dream of giving up'

Mr Downey, pictured with his partner Ms Scott and two sons Lucas Downey, 19 and Taylor Downey 12, say he is ‘too strong and too well to even dream of giving up’

Brain Tumour Research explains researchers believe a type of immune cell called T cells are a key component for defeating brain tumours. 

However, this treatment is very expensive. 

Currently the family have raised almost £5,000, but they need more than £100,000. 

‘We have managed to raise some funds but it is nowhere near what we need,’ Ms Scott said. 

‘Doctors told him immunotherapy may not be beneficial for Mark and it costs hundred’s of thousands,’ she added. 

There are no immunotherapy treatments approved for treating brain tumours within the NHS, that’s because there is no method that has been proven to have a lasting success with enough patients, according to Brain Tumour Research. 

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