By Suzanne Harrison
Six years ago, mother-of-three Louisa Gardener had just reached her 50s when she was told she had late stage 3 bowel cancer.
Not long beforehand, Louisa had suffered an accident when she was kicked by a horse – and suffered multiple injuries to her upper body.
“It wasn’t until I was in hospital having further surgery after the accident that a nurse said I should have a further check of my bowels,” Louisa, now aged 57, told Medical Forum. “What this showed me was that cancer doesn’t play by our rules and can have different signs and symptoms.
“I am one of the lucky ones. My surgeon did say that my decision to have a hysterectomy at the same time as the removal of the area where the tumour was made his job a lot easier. I am now monitored every three years for the rest of my life.”
Naturally, it was a challenging time for the former ski instructor. Her children were then aged 18, 16 and nine. And as far as she knows, there is no history of bowel cancer in her family.
“My cancer did not show the classic signs of bleeding, weight loss and bloating, but a rather uncomfortable tummy. I also tried a change in diet as some foods disagreed with what was described to me as ‘women’s pains’.”
Not that she hadn’t done the right thing and checked at the age of 50, either. A routine free screening test at that time came up clear.
To learn that bowel cancer screening in Australia is now starting from the age of 45 for people of average risk is good news for those who have experienced the disease firsthand. It’s no wonder. Bowel cancer is the deadliest cancer for those aged 25-44, according to Bowel Cancer Australia (BCA).
Updated guidelines
As a result – and after a five-year campaign by BCA – a milestone was reached in October last year when updated clinical practice guidelines were endorsed by the National Health and Medical Research Council (NHMRC).
For the first time in Australia, population screening (for people at average risk of developing bowel cancer, i.e. those without symptoms) is now recommended every two years for people aged 45-74. Previously, it was 50-74, along with a lowering of the National Bowel Cancer Screening Program start age from 50 to 45.
“People aged 40-44 (previously 45-49) are also able to request screening via their healthcare professional before receiving their first NBCSP invitation,” the BCA said.
Previously, only Australians aged between 50 and 74 were sent a free test kit by the NBCSP. It comes as a faecal occult blood test, or iFOBT.
People under the age of 50 had an increased risk of developing bowel cancer when they experience one or more symptoms of abdominal pain, rectal bleeding, diarrhoea and iron deficiency anaemia between three months and two years prior to diagnosis.
BCA recently launched its Never2Young advocacy agenda which seeks to improve care experiences and health outcomes for younger people by championing:
- Greater awareness: among the community and health professionals of early-onset bowel cancer.
- Lower screening age: in response to the increasing rates of bowel cancer in younger people.
- Prompt GP referral: to a colonoscopy for all younger people who present with symptoms that may be consistent with bowel cancer.
- Improved pathways: that ensure timely triage, diagnosis, and treatment for younger people.
- Better understanding: the challenges of early-onset bowel cancer to improve and tailor treatment, support, and care for younger patients.
- Further research: into the causes of early-onset bowel cancer, which has the potential to improve survival and/or help build a path toward a cure.
Last year, the charity hosted the inaugural Call on Canberra at Parliament House, bringing together 50 early-onset bowel cancer patients plus medical experts to raise awareness and advocate for important policy change.
They called for increased Federal, State and Territory funding for colonoscopy services to ensure the public healthcare system meets the clinically recommended (<30 day) target as part of a ‘wait time guarantee’ as well as investment and improvement in primary care awareness of age bias and development of early-onset guidelines and referral pathways to ensure timely triage, diagnosis, and treatment for younger people.
They also urged that screening start from the age of 40 as part of the current Clinical Practice Guideline Review.
Another Call on Canberra event is planned for June this year, and BCA is developing resources tailored to early-onset patients and GPs about the importance of investigating symptoms and prompt referral so bowel cancer can be ruled out as an underlying cause in younger Australians.
WA support
In WA, Dr Hooi Ee, a gastroenterologist at Sir Charles Gairdner Hospital where he is director of endoscopy and clinical adviser to the WA Health Department on bowel cancer screening, said the recent news from BCA was welcome.
Dr Ee was involved in the working party that contributed to BCA’s push to make the change.
However, he says there is still a way to go to ensure that this change flows through to disadvantaged groups, namely those in need of further education and advice on bowel cancer.
“I am pleased about the lowering of the age to 45, but we need to ensure that previously recognised inequities, that is, reduced participation and difficulties with colonoscopy access in certain groups, are not amplified, for example, among socially disadvantaged, Aboriginal populations, remote areas, culturally and linguistically diverse groups,” Dr Ee said.
“This requires more targeted education, greater focus on strategies to improve participation in these groups, and more directed pathways to access colonoscopy.”
But with bowel cancer posing such a risk to younger people, does 45 go low enough? And where does this leave GPs, a group always at the frontline of such diagnosis?
“Offering screening from age 40, in accordance with the updated guidelines, has the potential to maximise impact, saving more lives through early detection,” Mr Wiggins said.
“In addition to screening, however, GPs have a critically important role in symptom assessment in younger patients.”
Recent research, headed by Dr Klay Lamprell from the Australian Institute of Health Innovation at Macquarie University, investigated advice from people with early-onset bowel cancer on managing health service barriers to diagnosis.
The research revealed younger people with bowel cancer symptoms found themselves self-advocating as the only consistent and reliable source for overcoming age bias, barriers to diagnosis, and optimising outcomes for the deadliest cancer in those aged 25-44.
Younger people may spend between three months and five years seeing multiple doctors before diagnosis. They may make 10 or more visits to GPs.
“Even when younger people experience blood in their stools or rectal bleeding, GPs may not immediately refer them to specialists for further investigation,” Mr Wiggins said.
“Early-onset bowel cancer patients are different from later-onset bowel cancer patients in their diagnostic trajectories; time to diagnosis can be 60% longer with a greater number of missed diagnostic opportunities; and younger people are more likely to be diagnosed in later stages of the disease.”
Late-stage diagnosis increases the likelihood of aggressive treatment with physical, psychosocial, and quality of life outcomes that are uniquely challenging for this under-50 patient population, especially with regard to fertility and ostomy management, he said.
Role of GPs
Dr Lamprell’s research found that patients perceive their GPs’ low suspicion of cancer, given their age, as a bias that shapes the nature of clinical assessments, influences the investigations conducted and referrals given, and creates tensions which obstruct shared decision-making.
Eventual referrals and lengthy wait times for non-urgent colonoscopies were also a common theme of delayed diagnosis and a cause of patient dissatisfaction with GPs.
Additionally, young people seeking diagnosis are also challenged by limited clinical awareness of early-onset bowel cancer.
“The researchers found with the rising incidence of bowel cancer in people aged under 50, there is a mounting imperative for GPs to receive more information and clinical guidance on early-onset bowel cancer diagnosis,” Mr Wiggins said.
Cancer Council Australia said in a report that a recommendation from a GP has been shown to be the most significant factor in encouraging people to screen for bowel cancer with (iFOBT).
One survey showed more than 90% of respondents would be ‘likely’ or ‘very likely’ to have an iFOBT every two years if advised by a doctor.
Pilot program invitees who did not participate reported a greater likelihood of doing so if it was recommended by a GP, the council said.
“GP involvement is, therefore, critical to optimal participation in bowel cancer screening programs. While there is evidence that GPs support bowel cancer screening, they have articulated a need for further education on the issue.”
Elsewhere, lowering the screening age to 45 was implemented in the US in 2021. Recommendations to begin screening from the age of 45 were first introduced there in 2018, when the American Cancer Society updated its guidelines in response to rising rates of the cancer and mortality in young and middle-aged populations.
BCA says that by 2021, the American College of Gastroenterology, the US Preventative Task Force and the US Multi-Society Task Force on Colorectal Cancer had all joined the ACS in updating their guidelines to the recommended 45 rather than 50. In the UK, it is being lowered, but from 60 to 50.
But what else needs to be done in Australia to combat such a serious disease in younger people?
“While we recognise lowering the screening age is one step forward, it doesn’t address the rise in early-onset bowel cancer,” said BCA medical director Associate Professor Graham Newstead.
“Younger people need to be aware of, and act on, these potential signs and symptoms and have them investigated to rule out bowel cancer as an underlying cause.”
This is not news to Louisa, who can’t stress enough the importance of being on top of screening, especially with modern dietary habits.
“My feeling to testing now is that we are very good at being aware of what we can see on the outside and then doing something about it. But what we can’t see, we sweep under the carpet and forget about,” Louisa said.
For more information: www.bowelcanceraustralia.org
