Dad was told his cancer was terminal - before a second opinion gave him new hope

06 November 2023 , 14:23

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Edward O'Neill, 28, from Marazion in Cornwall was told nothing more could be done to save him (Image: No credit)

A young dad from Cornwall claimeds he was mistakenly told his cancer was terminal, only to be given new hope by a second opinion. However, he said the NHS stopped funding the only treatment that is working for him. Edward O'Neill, 28, was diagnosed with Hodgkin lymphoma in 2013 when he was just 17.

Despite undergoing various treatments and surgeries throughout his adult life, his cancer returned in 2016 after he first went into remission in 2015. Earlier this year, doctors at Royal Cornwall Hospital told Edward, who is a father of one, that there was nothing more they could do to treat him.

Edward and his wife Milly, 25, sought a second opinion, and he was later put on further treatment on the NHS in Manchester. They believed that if he continued taking a drug called Brintuxamab, which has been successfully shrinking his cancer, he may go into remission once more. However, they said the drug was only issued for a limited amount of doses on the NHS, meaning Edward had just two rounds left before his cancer likely started growing again.

Milly told CornwallLive: "What a lot of people don't know is the NHS allows you to have a certain amount of treatment or, for some, only once in a lifetime - even if they work. This treatment he's on now is working very well but you're only allowed in your lifetime 16 doses. His 16th is in three weeks."

She continued: "It's been working really well and he's had a PET scan that shows that. Royal Cornwall Hospital at Treliske, Truro, told him before this that he was terminal and there was nothing they could do. But after a second opinion he's been getting this treatment that is working."

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"We were wrongly told he would die which is just not the case," she said, as they've been advised they should consider buying the medication privately - at £2,500 a vial. This adds up to £7,500 per treatment because Edward's weight means needing three vials per go.

Edward and his wife Milly, 25, sought a second opinion, and he was later put on further treatment on the NHS in Manchester (No credit)

Milly expressed her frustration: "We're panicking to get money together so fast and that makes me so angry. If a treatment is working in someone's body, why not treat them until the cancer is gone? He is tolerating the drug well and it's working as it should."

She also added: "Edward's case is complicated" but finds it appalling that a drug that is working so well would not be available to her husband on the NHS for as long as he needs it. "If we stop treatment his cancer will start growing again but there is the small light at the end of the tunnel."

Milly expressed her deep love for Edward, saying he is "everything" to her and her seven-year-old daughter, Skye, who sees Edward as her dad. "She just knows him as dad so he's got a family and we all love him so much and don't know what we'd do without him."

In an effort to continue his treatment, Milly and Edward have set up a GoFundMe page. You can check out their fundraiser here.

A spokesperson from the Royal Cornwall Hospitals NHS Trust shared: "We had been caring for Mr O'Neil for 10 years since his first diagnosis and our cancer services team was deeply saddened that despite their continued efforts, and having exhausted every possible treatment option, Mr O'Neil's cancer had stopped responding to treatment earlier this year." They added, "Mr O'Neil has been brave and determined throughout the course of his disease. We fully understand his decision to seek a second opinion and sincerely hope this does give him some further respite."

* An AI tool was used to add an extra layer to the editing process for this story. You can report any errors to [email protected]

Lisa Letcher