Brain tumour victim Jai Nelson has life-saving surgery

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A County Antrim man, told by Belfast Health Trust that his brain tumour was inoperable, has had life-saving surgery in a private hospital in Dublin.

The neurosurgeon there said the procedure was routine. Jai Nelson, 41, said he believes the Belfast trust's decision was due to a lack of money.

The BBC has learned there have been at least five other similar cases.

The trust said there was no proven evidence that surgery in this setting was beneficial.

Prior to his surgery, Mr Nelson received treatment from the Belfast Trust which had reduced his tumour by 50%.

Mr Nelson said: "It's all about funding. I think they thought 'it's easier to give him the drugs' and maybe I would just slip away."

Mr Nelson said he had to seek a second opinion, something which should have been offered to him when he received his diagnosis initially.

But in a statement, the Belfast trust said: "A second opinion was also offered within the NHS, however Mr Nelson was keen to seek private surgery and opinion.

"There is no proven evidence that surgery in this setting is beneficial."

Mr Nelson's story began 18 months ago when he was told he had a grade four glioblastoma, the most aggressive and common type of brain tumour.

He had been in excellent health. However, a seizure left him with a broken neck and he was admitted to Belfast's Royal Victoria Hospital.

Six weeks later an MRI scan revealed a 4cm tumour on the right hand side of his brain.

Mr Nelson's neurosurgeon said the brain tumour was inoperable, as removing it could possibly paralyse him or cause him to lose his speech or even his sight.

Instead, he was offered chemotherapy and radiotherapy.

"They told me it was just too risky, I could suffer a stroke or lose my speech," he said.

"I took their word and at that stage was in so much shock I didn't question the possibility of seeking another opinion or I suppose question why they wouldn't operate."

Mr Nelson underwent a gruelling six months of chemo and radiotherapy which shrunk the tumour by 50%.

He was also taking steroids and morphine. However, a chance meeting between his wife, Fiona, and a colleague gave the couple the chance they had been hoping for.

Image caption,
Mr Nelson had a 4cm tumour on the surface of his brain

Mrs Nelson, who works for the BBC, had been looking on the internet at other options, including surgery in the United States.

But instead of having to travel thousands of miles, Jai's second chance came just 100 miles down the road in Dublin.

Mrs Nelson said: "We didn't actually talk about it together, but we both knew that dying wasn't an option.

"Through work, I was put in contact with a man who lived in Belfast and who had been through the same thing.

"He told us to get in contact with the neurosurgeon Chris Mascott at the Beacon private hospital in Dublin.

"I emailed and the next day he rang asking to see Jai's scans. Just two hours down the road - we travelled down the very next day."

Despite the Belfast Health Trust diagnosing the tumour as inoperable, Mr Mascott said it was routine.

The neurosurgeon told the BBC: "It wasn't difficult, the tumour was on the surface of the brain, it wasn't deep and it wasn't wrapped in arteries.

"By removing his tumour, he came off the steroids and very much and very quickly returned to his old self.

"He has a much better quality of life and, hopefully, we have extended his life."

Mr Mascott, who has been living in Dublin since 2003 and recently took his place at the UPMC Beacon Hospital in Sandyford, described his approach as "radical".

However he said the basic training he received in Canada was that the removal of a tumour was almost always the best option.

"Why surgeons didn't do it at the Royal - I don't understand, but I suppose every surgeon is different," he said.

Image caption,
Neurosurgeon Chris Mascott said the surgery was routine

While there is a strong possibility that Mr Nelson's brain tumour will return, when, or to what extent, is anyone's guess.

Mr Nelson continues to attend the Cancer Centre in Belfast. He describes his treatment there as fantastic.

"The nurses are fantastic, their aftercare is brilliant.

"I responded to the treatment and I can firmly say that my consultant oncologist Mr David Conkey is a friend. In fact Mr Conkey and Mr Mascott both saved my life."

Mr Nelson's case highlights whether a patient should have to ask for a second opinion. According to the couple, it should be offered immediately.

Mrs Nelson said: "We definitely in NI have this belief in the 'big doctor' that their word is gospel. We just accept it and don't challenge it.

"But we should be given the option and told that it is ok to seek another opinion."

In a statement, Belfast Health Trust said it was glad Mr Nelson was doing well.

It added that after his initial chemo and radiotherapy, "a scan confirmed that the treatment given by the NHS had reduced the tumour by 50% and also the swelling round the tumour.

The trust said there was no proven evidence that surgery in this setting was beneficial.

However, Mr Nelson said: "In Dublin I was given a second chance, I wasn't written off - I'm still here. It was a miracle."