A woman from Northern Ireland has spoken out after her brother's death from a rare form of cancer after he was allegedly misdiagnosed.
Christine Courtney, from Antrim, said the family could have had more time with her brother Daniel McCloskey if he wasn't misdiagnosed by consultants at Antrim Area Hospital last year.
The 36-year-old first attended the hospital in June 2021 after experiencing chest pain, and a CT scan showed a 3cm mass on his heart. However, at this time Daniel was told it appeared to be inflammation that would go away on its own.
Read more: NI family campaigning for better support after dad's death from rare cancer
Christine said Daniel was sent home without medication or pain relief. After a further four months of pain and breathlessness, he returned to Antrim Area Hospital in October after coughing up blood.
An assessment at this stage showed the mass on his heart had now grown to 6cm. Daniel received an apology and was told he should not have been sent home in June.
"It's difficult watching your big brother cry in pain and get angry through frustration of our health service not taking him seriously," Christine told Belfast Live.
"He couldn’t stand the pain, he knew his own body and felt something just wasn't right, so he went back to the hospital in October.
"The consultant told him something is definitely not right, and also said he could've had a massive heart attack. They wanted to observe him for a few days until he could be transferred to the Royal Hospital for a biopsy."
However, Daniel's few days of being in hospital waiting on a biopsy ended up being a month.
Christine said: "His health was deteriorating rapidly, we could tell from his pictures and video calls. He then started to get bad nose bleeds and blood clots started to come up from his lungs, he sent us pictures of it.
"He cried on the phone to us for the duration of his stay as we weren't allowed to visit him, this upset him so much as Daniel was a very soft and sensitive young man. Even then as a family we didn't know that was going on, any time we asked what's wrong with Daniel they had no answers for us and couldn't tell us anything."
Five days after his 36th birthday on November 28, 2021, Daniel was transferred to the Royal Victoria Hospital in Belfast for a biopsy.
He was taken for a biopsy soon after, and told his family this was his first step towards "getting fixed." Daniel felt relieved at the prospect.
However, he soon received a devastating diagnosis when surgeons attempted to take a biopsy.
"He felt like he was finally going to be in better hands and on the mend. But later that evening we got a phone call from the surgeon telling us they couldn’t do the biopsy, as when they put him under, they tried to put the camera down his throat and couldn’t see anything, except blood and a vast number of tumours that had spread so rapidly," Christine explained.
"The tumour on his heart was growing fast and had spread to his lungs and airways. They diagnosed him with angiosarcoma, a very rare and aggressive cancer.
"They said it was very unlikely he would wake up from this, even though they hadn’t done anything. They said he could have a major hemorrhage at any moment."
Angiosarcoma is rare cancer that forms in the lining of blood vessels and lymph vessels. It can occur anywhere in the body, but often occurs in the skin, breasts, internal organs, bones, and the body’s deep tissues. In very rare cases, angiosarcoma can occur in the heart.
Following his diagnosis, Daniel was moved into intensive care.
Christine said: "The staff were amazing, they gave him a syringe driver and we took turns as a family staying with him.
"Three days after being on life support, the nurse told us he was asking for his mum and dad. This threw us all, even the professionals couldn't believe it. We were overjoyed as he was awake.
"But the consultant told us that it was a certainty that he would die from this, but there was no time limit. Things seemed like they were looking up, he was talking a little, eating and drinking a little bit. He had hope about maybe getting home after a week or two and maybe having a year or two left with this beast of a cancer.
"We knew that this wasn't going to happen, we thought a month or so maximum, but all we could do was keep his spirits high and be there for him and keep being positive."
Daniel was soon moved to the Macmillan Palliative Care Unit in Antrim Area Hospital. Although things had started looking up slightly, on December 15 things began to slow down again.
Christine added: "He was getting more and more agitated with his breathing and extreme restlessness. We did our best as a family making him comfortable and trying to keep somewhat positive, it was the hardest thing we've ever been through.
"On the 17th he told my sister, myself and my mum that he wanted to lie down for 'this'. Mum and my sister held his hands and I rubbed his legs as the fluid was immense. He passed away peacefully within 15 minutes."
Christine said before he passed away, Daniel told her he wanted to leave a legacy to raise awareness of this rare form of cancer.
As well as this, the sister said the family are fighting for justice for him, as they wonder if they could have had more time with him if he had been diagnosed quickly.
"It’s still so surreal that he’s gone, he was the first born to four of us and the only boy," Christine said.
"He told me he wants to leave a legacy in aid of this rare disease, so I will for him; I want to help find a cure for this cancer and raise more awareness about it, so everyone out there can have a chance.
"We just want justice for Daniel, so many people die through misdiagnosis, maybe we could've had more time with him and given him all he wanted to do in life before it was his time to go if it was seen and treated back in June."
A spokesperson for the Northern Trust said: “It is not the Trust’s policy to publicly discuss individual cases. However we would like to offer our sincere sympathy to the McCloskey family.
"This is part of an ongoing internal review under the terms of the Trust's Serious Adverse Incident policy. The Trust has been, and will continue to be, in regular communication with the family.”
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