Dame Deborah James, who touched the hearts of millions across the UK by chronicling her five-year battle with terminal bowel cancer, has died at the age of 40, her family said on Tuesday.
The British mother of two had been making headlines ever since she announced on May 9 that she had very little time left and was being moved to end-of-life care for terminal bowel cancer.
In the space of seven weeks, she raised more than £6.75 million (€7.8 million) for Cancer Research UK via her Bowelbabe Fund.
She had tea with Prince William, was honoured with a damehood and even inspired retailer Marks & Spencer to add information about the signs and symptoms of bowel cancer on its toilet roll packaging.
The former headteacher, who leaves behind a husband and two teenagers, has put the spotlight on bowel cancer in an unprecedented way, reaching a younger public with her @bowelbabe Instagram account which has over 900,000 followers.
With her story came the realisation, for many, that bowel cancer can kill even young and healthy-looking patients if it’s not caught early enough.
Researchers estimate that by 2030, the disease will have become the deadliest cancer for people aged 20 to 49. Cancer organisations suspect lifestyle factors such as obesity, alcohol and processed meat consumption may be playing a role in this earlier onset, but research into the causes is ongoing.
Zorana Maravic, head of the umbrella patient organisation Digestive Cancers Europe, told Euronews Next that bowel cancer prevention would be much easier if more people, as James did, spoke openly about the disease.
Maravic drew a comparison to the impact Hollywood actress Angelina Jolie had on raising awareness of breast cancer. “We need an Angelina Jolie for colorectal cancer,” she said.
'We could cut mortality in half'
Across the EU, around 340,000 people are diagnosed each year with bowel cancer, also known as colorectal cancer, and around 160,000 die of the disease.
Screening is key when it comes to saving lives.
Patients diagnosed with stage four disease - whose cancer has reached the metastatic stage - have a less than 10 per cent chance of surviving five years, according to Digestive Cancers Europe.
By comparison, patients diagnosed at stage one, when a tumour can easily be removed during a colonoscopy, have a 90 per cent chance of living another five years.
The problem right now is Europe is diagnosing far more patients in stage four than in stage one, but it could save tens of thousands of lives with better screening practices, Maravic said.
She cited the Netherlands and Slovenia, which both manage to diagnose close to half of their patients in stage one - and where mortality from the disease is much lower.
“The patient is diagnosed, they undergo colonoscopy, this is removed and they don't receive chemo. There is nothing afterwards. They go back to their regular lifestyle,” Maravic said.
“We believe that if we applied the same practices across the whole of Europe, we could reduce these mortality rates by half. Can you imagine seeing, I don't know, 70-80,000 patients that survive thanks to good screening practices? I mean, this is huge”.
Better screening could also save money: Digestive Cancers Europe estimates a roughly tenfold difference in treatment costs for early-stage (around €4,000) and late-stage disease (€40,000).
What is good bowel cancer screening?
It starts with a well-organised database of the population that needs to be screened - usually people from the age of 50.
In the year of their 50th birthday, people should receive a letter informing them that they will receive a faecal immunochemical test (FIT) - which uses antibodies to detect blood in the stool - to carry out at home.
“Ideally, you should first receive this explanation - why you will receive this test and why it is important that you do this test,” Maravic said, acknowledging that many people are still put off by the idea of taking a faeces sample.
“It is really a very simple test. You receive a tube, you take a sample of your poo and you close the tube and you send it back - usually with a pre-stamped envelope,” she explained.
“It literally takes less than, I don't know, 10 seconds to do it because it's really simple - you have this stick, you stick it in the poo, you put it back”.
Then comes the result of the test. In most cases it will be negative and great, you have nothing else to do. If positive, however, you should be invited by your general practitioner to schedule a follow-up colonoscopy.
Once you do the colonoscopy, if you’re clear, you should be invited to do the FIT tube test again every other year.
“Unfortunately people associate testing with colonoscopy, but as I said, a majority of people receive this negative FIT so they don't go to colonoscopy,” Maravic stressed.
'Don’t die of embarrassment'
This fear of colonoscopy could explain why participation rates in screening programmes differ so much across Europe.
The EU has set a goal of 65 per cent, but few countries reach it.
Only a third of the target population in France and the UK take part in screening programmes, compared to around 60 per cent in the Netherlands and Slovenia, according to country data collated by Digestive Cancers Europe.
Campaigners say messaging is key to get people on board and raise awareness, not just among the population but also among doctors who might dismiss some patients as “too young” to worry about colorectal cancer.
“The last thing that anyone should do is die of embarrassment,” Richard Pleeth, a 37-year-old bowel cancer survivor turned campaigner, told Euronews Next.
Pleeth was just 33 when he was diagnosed with late-stage bowel cancer. He had emergency surgery and underwent nine rounds of chemotherapy. He’s now clear but has regular check-ups and an annual colonoscopy.
He didn’t have many obvious symptoms when he had his cancer diagnosis: “I'd noticed I was very tired. I started sweating quite a lot and I had some mucus in my stool”.
He’s urging people who may be concerned about bowel symptoms to go see a doctor and ask to do some tests.
“There are so many symptoms that you can see, a change in your bowel habits. That could be diarrhoea, it could be constipation, it could just be inconsistency,” he said.
“There could be blood in your stool or that could be bleeding when you wipe, you could have some discomfort in your stomach. You could just feel that you are feeling a bit weak and fatigued or you have some unexplained weight loss”.
He said that by breaking the taboo around bowel cancer symptoms, James has already made a huge difference in the fight against the disease.
“I think she's going to leave behind a tremendous legacy,” he said.
“I'm sure people have gone and got checked and they've been caught early enough just because of her. So she's already saved lives. And with the amount of money she has raised, she's going to continue to do that”.