Ben’s chronic cough was in fact testicular cancer... in his CHEST
How tumours usually found in reproductive organs can turn up in unexpected places
Six months after Ben Payne ran the London Marathon in a respectable five-and-a-half hours, the 36-year-old found he was struggling to walk up a flight of stairs. For the previous four months he’d been suffering with a persistent cough and night sweats, which he blamed on a lingering chest infection. He put the back ache on his right side down to carrying coal for the fire at the home he shared with his wife, Clare, 41, and son Noah, eight.
However, he couldn’t explain away the lack of fitness.
‘i couldn’t understand it. i’d trained hard before running the marathon that April, but by November even going up the stairs at work was leaving me breathless. i’d lost a few pounds, too, and my belt felt loose around my waist.’
But when Ben started coughing up blood, he became really concerned. ‘it was two days after Christmas and i made an appointment with my GP,’ says Ben, a PR manager from Shrewsbury, Shropshire.
Ben’s doctor was worried by his symptoms and immediately sent him to the Royal Shrewsbury Hospital for scans.
‘i remember having a chest x-ray and seeing the shocked expression on the doctor’s face when she looked at the screen,’ says Ben. ‘i asked if it was OK and she said she couldn’t say at this stage — but from her look i knew it was serious. My world fell apart.’
in fact, the scans revealed he had a large tumour in his chest. ‘Clare and i sat in the consultant’s room while a nurse took Noah off to play. The doctor told me i had cancer in my chest, but said they wouldn’t know which type until i had a biopsy. it was devastating for both of us.
‘Going home knowing i had cancer made being unwell a reality — before that i’d kidded myself it was something much less serious.’
TWO weeks later, after a biopsy at Queen Elizabeth Hospital in Birmingham, Ben was told he had an orange-sized growth, a so-called germ cell tumour. These are cancers that affect men and women, but are usually found in the testes or ovaries. Ben’s was a mediastinal teratoma, which he was told meant that he had testicular cancer — except it was in his chest.
Such cancers start in the germ line cells, the cells in the growing foetus that are destined to develop into eggs or sperm. Hence a germ cell tumour normally occurs in the ovaries or the testicles.
As a foetus develops, germ line cells will ‘migrate’ from the starting position to the testicles or ovaries. But sometimes — for unknown reasons — the germ line cells won’t migrate properly and get stuck in other areas of the body, including the brain, stomach and chest.
if these become cancerous for some reason, it can mean patients develop what’s essentially ovarian — or, as in Ben’s case, testicular — cancer in other organs.
For Ben, a germ cell tumour had formed in his mediastinum, the central part of the chest between the lungs — the area includes the heart and major blood vessels.
His symptoms were probably caused by it pressing on his lungs and heart. The reason why this type of tumour develops in other parts of the body is unclear, says Dr Mike Leahy, a consultant in medical oncology at The Christie in Manchester, one of Europe’s largest cancer treatment centres.
‘we know that testicular cancer comes from unstable germ line cells, but why it develops in the chest area, we don’t know,’ he says.
‘There are theories as to why these tumours locate in other places, such as the cells getting lost along the pathway they should take when they migrate when the embryo is growing.
‘Other uncommon places for germ cell cancers to grow are in the abdomen and the brain. Sometimes they progress rapidly, but in other patients, like Ben, it’s likely the tumour had been slowly growing for months, if not years, before he knew something was wrong.
‘if a man has testicular cancer in his testicle, he will usually be able to feel a lump,’ says Dr Leahy. ‘But if this cancer is growing in the chest, the tumour will have to be large enough to cause significant symptoms before it’s noticed. in some ways, it’s incredible that anyone survives them. And the prognosis for those with mediastinal germ cell tumours is generally poor — some patients are cured and live a normal life, others live only a few months.’
Ben couldn’t believe the diagnosis. ‘Being told it was like having testicular cancer shocked me,’ he says. ‘i was gobsmacked that you could have it in your chest, and so was everyone i told.
‘The idea of being treated gave me hope — but i never asked about my survival chances out of fear. i remember looking at an orange and thinking the tumour was bigger. i couldn’t believe something so large was growing inside me.’
Ben was offered chemotherapy — which germ cell tumours are particularly sensitive to — and he started treatment at the end of January 2014, less than a month after his diagnosis.
He had four cycles of treatment, with breaks of two weeks in between, and on each occasion stayed in hospital for six days.
it took everything out of him. His hair fell out and he was exhausted — he also began to struggle with his relationships.
‘i just wanted to be alone,’ he says. ‘i found it very hard even to show any affection to Clare, who was brilliant during this time, or my family until a few days later.
‘Every night in bed i felt extremely anxious and each morning, when i heard Noah’s footsteps in his bedroom, i worried it might be the last time i ever heard them.’
Ben continued to have regular blood tests to measure the tumour markers in his blood.
After the second round of chemotherapy, these showed the treatment was working. in March, the tumour had shrunk enough to be removed by surgery,
‘if someone has this form of cancer in the testes, we would usually remove the diseased testicle before carrying out chemotherapy,’ says Dr Shobhit Baijal, a consultant oncologist at Heartlands Hospital, Birmingham, and Spire Parkway Hospital, Solihull.
‘But in a case where the germ cell tumour is in the chest, we do administer intensive chemotherapy first to shrink it and make it easier to remove.’
BEN had the surgery at Heartlands Hospital in May 2014 under general anaesthetic. it took four hours because doctors discovered it was wrapped around vital organs and meant part of his right lung as well as some of the nerves in his diaphragm and the lining around the heart had to be cut away, too.
He was in intensive care for a day, and spent another three in hospital before he was allowed home with strong painkillers.
But luckily his recovery was rapid. By August, he was able to ride a rollercoaster on a family holiday to Disneyland Paris and returned to work soon after for the first time in eight months.
Ben had another scan in June this year and will have blood tests every four months until 2019, five years after he began treatment, to check the cancer hasn’t returned.
‘My consultant said that if the cancer didn’t come back after 12 months, the chances of it returning were less likely,’ he says.
‘That was reassuring — though you can never say never,’ says Ben, who was fit enough to run the Belfast half-marathon in September in support of the Teenage Cancer Trust.
‘i become more breathless when i run, which reminds me of what i went through,’ he says.
‘But i’ve physically bounced back well and have no other side-effects. it’s changed me in that i really do try to make the most of every day.’
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