Don’t listen if you’re told you’re too young to have cancer
That’s what a GP assured Amy — and it almost cost her life
While every bride’s wedding day is special, the day Amy lewis married her partner Chris was even more so than most.
it wasn’t the cake, the dress or even the surroundings that set it apart. What really made it such a wonderful moment when they married in November 2014 was the fact that, even though she was just 30, Amy could so easily have not lived to see the day.
‘There was a time i thought i wouldn’t get to marry Chris,’ she says. ‘i thought i’d be too ill or i might not even be here.’
Amy, 32, a chartered accountant from Wetherby, West Yorkshire, only made it because she refused to believe her GP’s view that she was ‘too young’ to have cancer.
Amy had irritable bowel syndrome — bouts of diarrhoea as well as constipation and bloating — for years, so when she began to experience discomfort going to the loo in 2011, she presumed that was the cause.
‘Stress can make it flare up and i was busy with work,’ she says. ‘But gradually it became worse and worse.
‘Then one day i noticed bright red blood in my stool. i felt a bit concerned because i knew blood could indicate danger. So, i decided to see a doctor.’
Amy’s concern was heightened by the fact she had a family history of bowel cancer — her grandmother had died of it in her 70s and as a result her mother had regular checks.
Yet though Amy’s GP referred her for tests, he didn’t fast-track her because of her age — at the time, she was 27.
‘i told the doctor i had discomfort passing stools and had found blood. he smiled and reassured me i was “too young to have bowel cancer” and that it generally affected older people. But, to be on the safe side, he referred me for a colonoscopy.’
This is where a small camera on a thin, flexible tube is inserted into the colon.
Her GP explained the colonoscopy might reveal signs of an inflammatory bowel condition, such as Crohn’s disease. ‘he warned me it might take a few months, though, because, due to my age and not being “at risk”, it was not considered urgent,’ says Amy.
in April 2012 — six months after seeing her GP, still not having had a colonoscopy and having lost a stone in weight — Amy burst into tears driving to work.
‘i just felt so indescribably ill,’ she says. ‘i felt weak, i couldn’t eat without immediately having to go to the toilet and was not like myself at all. i felt there was something seriously wrong.’
That day, Amy left work early and Chris urged her to go to A&e. ‘i drove myself there, alone, and was admitted for tests,’ she says.
As she had been on holiday to Cuba earlier that year, Amy was put on a tropical disease ward because doctors feared her bowel problems might be due to an infection she’d picked up in the tropics.
‘it was absurd. i kept saying there was no way that could be true because i’d had these pains and the blood in my stools for months — long before i’d gone away,’ she says.
Two days later, tests revealed she had a stage three tumour in her bowel, meaning it had spread into surrounding tissue.
‘i didn’t cry. Nor did i think i was going to die — but i was in deep, deep shock,’ she says.
‘All the time i’d felt ill i’d believed i was too young to have bowel cancer, and even my GP said i was.’ Amy’s story echoes that of Stephen Sutton, the teenager who died of colorectal cancer in 2014 when he was just 19.
Doctors had misdiagnosed Stephen’s cancer as constipation for six months before he was finally diagnosed with cancer. They presumed he was too young to have the disease.
in fact, say experts, though bowel cancer is most prevalent in older people, it is not uncommon in the under-40s.
‘The average age to diagnose bowel cancer is 70, but around 6-7 per cent of new cases occur in people under 40,’ says Willie hamilton, a professor of primary care diagnostics at the University of exeter.
The charity Bowel Cancer UK has reported it often hears from younger people who have experience problems getting a diagnosis and support. Professor hamilton says that, though bleeding from the back passage is a classic symptom, there are other things to look out for.
‘A change i n your bowels — especially to looseness or going more often — can be a feature.
‘Abdominal pains, sometimes weight loss, extreme tiredness and anaemia may all re present bowel cancer.’ The problem for GPs is that many bowel cancer indicators overlap with other less serious conditions’ symptoms that tend to be far more common.
it is not unusual to confuse the symptoms of bowel cancer with IBS, as happened in Amy’s case.
But Professor hamilton says: ‘Bleeding from the back passage is very unusual for IBS, as is weight loss. either of these symptoms makes colorectal cancer more likely, while pain can be present in cancer or Crohn’s disease, but is more prominent in IBS.’
Amy was t ol d s he’d have chemotherapy and radiotherapy to shrink the tumour before surgery to remove it — but first she needed to make an important choice.
‘The doctors said i could harvest some eggs beforehand in case Chris and i wanted children,’ she says. high-dose chemotherapy can stop the ovaries from working.
But it was a huge gamble. ‘ it meant putting the treatment back by eight weeks,’ she says.
‘We talked about it for hours. Chris and i had planned to marry and have a family.’
They decided it was not worth the risk of putting off treatment.
‘i longed to be a mum one day, but i’d already wasted so much time by not being diagnosed sooner, so i couldn’t risk it,’ she says.
She had the chemotherapy and radiotherapy between May and October 2012.
Then, in December that year, she had surgery to remove the tumour and parts of her bowel.
Afterwards, she was fitted with a temporary stoma bag — where surgeons created an opening in her abdomen to collect waste in order to give her bowel time to heal.
‘it was awful at first,’ she says, but after nine months, the procedure was reversed when Amy’s bowel was functioning normally again.
The following December, Chris and Amy were on holiday in New York, walking in Central Park, when he dropped to one knee and proposed.
‘it was a very emotional moment. We’d been through so much and for so long life had seemed so dark, but now we had something amazing to look forward to,’ says Amy.
She has scans every six months. ‘i had follow-up tests to check if there was a genetic reason in my family — such as lynch syndrome, like Stephen Sutton had — that had caused my nan and i to get cancer, but all the tests came back as clear,’ she says.
‘There was no genetic reason; it was just one of those things.’
Professor hamilton says: ‘ The best thing a patient can do when their GP appears not to be listening to their concerns about their bowel symptoms is to be upfront and say: “i’m worried it’s cancer because. . . ”
‘This opens up the conversation. The GP may not have considered cancer as a possibility and can then discuss whether testing would be a good idea.
‘equally, the GP may have good reasons for thinking cancer unlikely and can share these with you. either way, you know the possibility has been taken seriously.’
Now Amy wants to raise awareness among younger people.
‘Bowel cancer is seen as an older person’s disease, mainly because young people don’t actually talk about it,’ she says.
‘i am just so thankful i went to A&e and the tumour was spotted.
‘if i had waited for months longer to have the colonoscopy, i might not be here today.’