Man who has rare cancer says 'I can't give up'

Owen Winter was diagnosed with hemangiopericytoma in 2010

A man who was diagnosed with a rare form of cancer in 2010 and is now in palliative care has said "I can't give up".

Owen Winter was diagnosed with hemangiopericytoma - a sarcoma tumour with no established treatment - after antibiotics failed to resolve what doctors suspected was an abscess.

The 27-year-old, from Derby, told the BBC there is no prognosis for the cancer and said: "I've just got to hope it doesn't grow any more, or it just grows as slowly as possible."

He added he had chosen to speak out about his condition for people going through similar experiences and to help them realise they were "not alone".

Sarcoma UK said only six cases of the cancer were diagnosed in England on average each year and the low incidence of the disease made it "incredibly difficult" to study.

The charity said sarcomas were uncommon cancers that could affect any part of the body, including the muscle, bone, tendons, blood vessels and fatty tissues. 

"I didn't want to talk about my story as I find it quite hard and it brings back bad memories," Owen said.

"But I've decided to get it out there, not just for my sake, but hopefully for people going through similar things to realise they're not alone."

Owen and his mum Mandy Winter

Owen went through intensive chemotherapy at 12, which led to side effects including mouth ulcers, diminished strength and hair loss.

The treatment was so severe it had to be discontinued after two rounds.

"I was 12 and should have been out having fun with my friends," he said.

"Instead, I was stuck inside on my sofa, unable to move and praying that my hair grows back as quickly as possible."

Owen's tumour then remained stable for years and annual scans became routine, but when he was 18 it started to grow again.

Various experimental treatments followed, which brought severe side effects but no reduction in the size of the tumour.

"The worst thing about this is, if they can't find anything and my tumour keeps growing, it will kill me in the end," Owen said.

"There will be no room left for it to grow."

In early 2024, during what should have been a routine operation, doctors discovered the tumour had started to impinge on Owen's urethra, which required the insertion of a catheter.

"I was told I would now have to use this catheter bag for the rest of my life," Owen said.

"This was a big life-changing moment for me, and it happened in the click of a finger with no warning at all.

"It was a complete shock."

Owen then started another experimental treatment in October 2024, but it was stopped in December and Owen has now been placed in palliative care.

"Since I started, all my life has been either at the hospital or at home in bed. It really has taken it out of me," he said.

"I am up and down with my moods all day and my mental health is really bad.

"I am trying to work on it and get help, but it is very hard. I feel like I am just stuck, wasting away.

"All these problems are getting very hard to deal with, and it's like there's one thing after the next.

"I can't give up. I've got to carry on and just ride this pain out and see where it takes me."

Helen Stradling, support line manager for Sarcoma UK, said the cancer was an "exceptionally rare" form of soft tissue sarcoma.

She added: "When you're told you have a cancer so rare that even specialists may never have seen a case like yours, the emotional impact is profound.

"Owen is living not only with the physical effects of this disease but also with the intense psychological strain that comes from isolation, fear, and the lack of answers."

• If you, or someone you know, has been affected by mental health issues, the BBC Action Line has put together a list of organisations that can help