'My cancer was misdiagnosed for three years'

Jake Spencer, from Ashford, want to empower people to seek a second opinion

A man whose cancer was missed when he was a teenager has urged people to seek a second opinion if they are worried they have been misdiagnosed.

Jake Spencer from Ashford, Kent, was 17 when doctors told him his constant leg pain was sciatica.

But three years later it was discovered he had a rare and aggressive synovial sarcoma tumour, which had spread to his lungs.

Now 26 and cancer-free, Mr Spencer said: "It took 941 days for me to be correctly diagnosed and I think of myself as very lucky to have survived."

Mr Spencer said he was sharing his story not only to raise awareness of this rare type of cancer - of which there are only around 79 cases per year in the UK - but also to "empower" the public to insist on a second opinion if they believe they have been misdiagnosed.

He said: "It’s infuriating to think that for so long I was told it was something that it wasn’t."

He said he knew it was serious when he collapsed on his driveway in pain, but when he went to A&E he said he was told it was just sciatica and to take painkillers.

Sciatica is where the sciatic nerve, which runs from your lower back to your feet, is irritated or compressed, according to the NHS.

"What 19-year-old collapses on a driveway in pain, from orthopaedic issues?" said Mr Spencer.

It took 941 days for Mr Spencer to be correctly diagnosed with a rare cancer

After a diagnosis of sciatica, he underwent physiotherapy, x-rays and shockwave therapy.

But in 2018, when doctors tried to drain a supposed fluid-filled sac in his leg, they discovered a tumour.

He said being told it was a synovial sarcoma tumour, an aggressive malignant type of cancer found in soft tissue, was a "hard pill to swallow".

He said: "It was genuinely terrifying. You think it would happen to someone else. It was really hard to hear."

Mr Spencer underwent radiotherapy and surgery in November 2018, when he was 19.

But in a check-up - while he was at university and during the pandemic - a shadow was spotted on his lungs. Doctors found another sarcoma tumour and in May 2020 he had an operation to remove it.

He said: "Treatment is painful, it’s exhausting, you just want to sleep all the time.

"It was a really hard experience, particularly through Covid."

'Infuriated' by late diagnosis

Mr Spencer said hearing he was cancer-free was "pure joy" and he thought "thank god it's over".

But he remains "absolutely infuriated" by his late diagnosis.

He said: "I’m really grateful that I got the right diagnosis in the end but I don’t think it’s something that should be fought so hard for.

"In the worst circumstance I could have lost my whole leg, in an even worse circumstance I wouldn’t be here.

"And the fact that that was mostly due to someone misinterpreting a scan makes me really angry."

Jake Spencer said it was an "incredibly hard" time, especially during Covid

Mr Spencer said: "People should just keep pushing for their diagnosis.

"If you've got a lump, or pain, or something suspicious then just keep pushing your GP or seek a second opinion.

"I am so grateful to so many healthcare professionals that made me well and that my cancer did actually respond to treatment."

'Rare but devastating'

Andy French, policy and public affairs manager at Sarcoma UK, said Mr Spencer's story "underscores the urgent need for improved early diagnosis of sarcoma".

He said, while "rare", the impact of sarcomas can be "devastating, especially when people are young".

He added: "It’s vital that more doctors and nurses are aware of the possibility that something could be sarcoma."