'A mother busy with a young family ignored blood in her stool — she had stage four bowel cancer'

“Between 1994 and 2021, rates of colorectal cancer in those under 50 increased by a third here. This increase was largely driven by those aged 20-35 years — their rate of colorectal cancer increased by three-quarters.” 

And between 2015 and 2021, O’Reilly says eight percent of all colorectal cancer diagnoses in Ireland were given to people aged under 50. The trend is “definitely alarming”, she says. And why colorectal cancer is increasingly striking at a younger age than previously is not fully known.

“We’re not 100% sure why. We know the microbiome and bacteria within our gut are really important for healthy gut functioning, and that an altered microbiome can increase colorectal cancer risk.”

O’Reilly says gut microbiome can change due to early exposure to antibiotics, alcohol consumption, raised BMI, or diet high in fat and processed food. “Yet we very often see people in the clinic who are fit, who’ve done all the right things to reduce risk. So, we’re just not there yet around determining what’s causing the increase in early-onset colorectal cancer.”

Helen Forristal, director of nursing services with the Marie Keating Foundation, reiterates that colorectal cancer is no longer a disease of the ageing person. “One in five diagnoses in Ireland are in people under 60. One in 10 are in under 50s.”

Ireland’s BowelScreen programme is open to people aged 59-69. The HSE plans to lower the eligible screening age by one year every year for five years. 

“At the Marie Keating Foundation we feel that’s too slow,” says Forristal.

She highlights European Commission proposals to update cancer screening recommendations — this includes an expansion of bowel screening to all 50 to 74-year-olds. 

“Many countries begin screening for bowel cancer at 50. The US and Australia have lowered their bowel cancer screening age to 45 — in the US, it’s based on a 51% rise in bowel cancer in 50-year-olds and under since 1994.”

The Marie Keating Foundation’s online petition to lower bowel screening age in Ireland from 59 to 50 had garnered 9,505 verified signatures by last week. “It’s urging the medical profession, policymakers and healthcare providers to consider [based] on the strong evidence that’s supporting this need for change.”

With patient prognosis determined by how advanced cancer is at diagnosis, it is worrying that more than half of patients under 50 diagnosed with colorectal cancer in Ireland present with late-stage disease.

“This means more than half either need chemotherapy to reduce the risk of the cancer spreading, or the cancer has already spread at time of diagnosis. [Whereas] those older than 50 have a lower rate of later-stage diagnosis,” says O’Reilly, explaining that the older cohort’s better outcomes are partly due to bowel screening.

The stark reality is “if a 70-year-old has new abdominal pain, weight loss, altered bowel habits and rectal bleeding, colorectal cancer will be an immediately likely diagnosis” among medics”, says Forristal.

“On average, patients under 50 will have had symptoms for six months before diagnosis. It’s a much shorter period in the older population. And six months is a long time if you’re saying you have abdominal pain or rectal bleeding.”

O’Reilly says while early-onset colorectal cancer is increasing, it is still relatively uncommon. “So, neither patient nor medical practitioner think of it in younger patients, especially when they’ve previously had good health. And a lot of symptoms can be explained — rectal bleeding could be haemorrhoids so a younger patient could be given a haemorrhoid treatment and told ‘let’s see you again in three months’.”

Forristal has worked “with people under 50 who’ve unfortunately died from metastatic bowel cancer”. She recalls six women joining the Marie Keating Foundation’s Positive Living Group during covid. “There were all under 50 with metastatic bowel cancer. One lady died at 51. Another — 38 at diagnosis — died last year.”

The powerful Marie Keating Foundation #NoRegrets campaign is focused on the rise in early-onset colorectal cancer, particularly looking at late-stage diagnosis. It is a beautiful but heart-wrenching campaign, says Forristal. “We had a group of patient representatives, all under 50, who formed their own group — the Irish Colorectal Cancer Community. Now they’re called Bowel Cancer Ireland.

“These ladies and one man worked hard to leave a legacy of what they’d gone through. Their core message — whatever you regret in life, don’t let it be that you didn’t get yourself checked. One lady had blood in her stool — as a mother busy with a young family she ignored it. She ended up with stage four bowel cancer.”

Resilience through treatment

In 2022, Dublin-based Niamh Conroy, then 45 and a mum-of-four, was diagnosed with stage four rectal cancer with metastasis to her liver. She underwent colostomy and first-line chemo treatment for colorectal cancer — this also treats metastatic disease. She responded well to treatment.

“I was on maintenance treatment after. I’d a very good quality of life overall. Then last June, existing liver metastases that had been dormant started re-activating.”

Conroy had TACE treatment in Germany — this gives high doses of chemotherapy to the tumour in the liver, blocking off its blood supply.

“I responded very well — my tumour markers plummeted. At the end of four treatments, I was given an extra hit with an ablation technique, burning the tumour from the inside out.” The tumour “shrank down to nothing” — and with no evidence of active disease by December — Conroy spent the whole month celebrating. Back for maintenance chemo in January, doctors noticed her tumour markers rising.

End of January scans unfortunately showed new spread of disease.

“It was the first time it had happened in three years. It had spread to my peritoneum.”

Conroy remains optimistic — she is currently undergoing screening for participation in a trial involving a treatment very successful against small cell lung cancer. “We hope success in one can translate to success in another.”

Conroy stays resilient because of her “vested interest in raising her children”. It is her focus, her determination. “It means I’m not afraid to try any new scary-sounding treatments or interventions.”

Now aged 47, she is still “fighting away”. 2025 will be a milestone year — her youngest child getting Communion, her third making Confirmation, her second doing the Junior Cert and her eldest turning 18. “And I’ll be 20 years married — I’m calling it my ‘year of joy’.”

A founding member of Bowel Cancer Ireland, Conroy says: “We started as eight, nine. There are only two of us now. Colorectal cancer can happen at any age. We need more compliance with screening, but our group was all under 50, so screening shouldn’t replace education. We’d like to see proper education overall, not just an awareness month.”

According to O’Reilly, colorectal cancer is Ireland’s second most common cancer. Una Kennedy, Dublin-based GP and GP advisor to the National Cancer Control Programme, says there are about 2,500 new cases annually. “Slightly more in males — 1,400 males to 1,100 females. Ninety-one percent are over 50 but you’re never too young to get it,” says Kennedy.

Survival from bowel cancer is improving here all the time — all age groups had increased five-year survival between 1994 and 2018. But it is vital to catch symptoms early. “If you’re diagnosed with stage one bowel cancer, your five-year survival is 97%. For stage four, it’s 14%,” says Kennedy.

According to a 2020-’21 HSE report, uptake of BowelScreen stands at 46.6%. “It’s quite poor,” says Forristal, who sees a stigma attached to “talking about poo” and to collecting a stool sample that you then send away for testing.

Spot the symptoms 

• Changes in bowel habits — diarrhoea, runny bowel movements, constipation, needing to poo more or less often than usual.
• Blood in your poo, which may look red or black.
• Abdominal issues — cramps, general abdominal pain, bloating that doesn’t go away.
• Weight loss when you’re not trying to lose weight.
• Tiredness and lack of energy when you’ve had enough rest.
• Any unusual change you know isn’t right for you.
• If you experience one or more of these symptoms, you should make an appointment to see your GP.

• For information on bowel cancer screening and using home test kits, click here.