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Despite alarming increases in bowel cancer rates, younger people report facing significant barriers to diagnosis due to perceived age bias and lack of awareness from their GPs.
Every year, 1680 Australians under the age of 50 are diagnosed with bowel cancer.
This accounts for 10.7% of all newly diagnosed bowel cancer cases.
Since the mid-1990s, the number of new bowel cancer cases has been increasing among young people, according to Bowel Cancer Australia, with a 266% increase in bowel cancer incidence rates in people aged 15-24 years over the past three decades.
Despite the increased incidences, two new studies have reported that young bowel cancer patients are struggling to receive a timely diagnosis, as perceived age bias and a lack of awareness may cause their symptoms to be minimised by general practitioners in some cases.
A difficult journey to diagnosis
Two recently published research papers in the BMJ Open and BMC Primary Care have investigated the perspectives of patients with early-onset bowel cancer regarding ways to improve the experience of care in Australia, New Zealand and the United Kingdom
The research was based on patients’ own reporting and recollection of their experiences, and the findings suggest that younger patients felt they must rely on self-advocacy in order to overcome age bias and receive proper investigation for a diagnosis. They believed that their age contributed to their GP’s low suspicion of cancer, and they reported that they were not offered screening for cancer even when “red flag” symptoms were present.
“Young people with bowel cancer say the same the world over. Because they are young, they are overlooked for bowel cancer,” said Chief Investigator Dr Klay Lamprell of the Australian Institute of Health Innovation, Macquarie University. “The research found younger people may spend between three months and five years seeing multiple doctors before diagnosis. They may make ten or more visits to GPs.”
“Patients perceive their GPs’ low suspicion of cancer given their age as an age bias that shapes the nature of clinical assessments, influences the investigations conducted and referrals given, and creates tensions which obstruct shared decision-making,” Dr Lamprell said.
The importance of self-advocacy
Consumers Health Forum of Australia CEO Elizabeth Deveny argues that self-advocacy can play a vital role in a patient’s experience and health outcomes.
“We believe all consumers need to advocate for themselves at all stages of diagnosis and treatment to ensure they have the right information and feel equipped to ask the right questions. Sadly, due to the variable levels of health literacy across the nation, not all people feel capable or confident to do this, especially at the early stages of a diagnosis,” Dr Deveny told InSight+.
“This advocacy may include understanding the implications of any health change, articulating their personal health goals, or even requesting access to diagnostic tools, treatment options and health information. Anyone who is not confident that their health care needs are being understood and met should return to their doctor or seek a second opinion.”
Greater awareness needed
The research concluded that a wider dissemination of information about early-onset bowel cancer was needed at a primary care level in order to overcome age bias and provide more responsive care.
“With the rising global 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,” Dr Lamprell said.
As part of their Never2Young initiative, Bowel Cancer Australia calls for greater awareness among the community and health care providers of early-onset bowel cancer. They also support lowering the screening age for bowel cancer to 45, as suggested in the 2021 clinical guidelines from the American College of Gastroenterology.
People under 50 years should be aware of the potential signs of bowel cancer when they experience one or more symptoms of abdominal pain, rectal bleeding, diarrhoea, and iron deficiency anaemia.
Bowel Cancer Australia CEO Julien Wiggins said, “Younger people need to be aware of, and act on, these potential signs and symptoms and have them investigated so as to rule out bowel cancer as an underlying cause.”
Bowel Cancer Australia urges people not to accept “you’re too young to have bowel cancer” as an explanation for their symptoms, and to ask their doctor for a referral for further investigations when they have concerns.
But a 266% increase? Why isn’t that ringing alarm bells? What’s causing the bowel cancers in the first place? Some of the increase might be attributed to greater awareness and testing but not all.
Patients with unexplained abdominal pain should also be investigated
To add to my comment; It was “drummed” into me as a medical student, and again as a surgical trainee, that “iron deficiency anaemia = colon cancer until proven otherwise “‘ and my clinical practice later illustrated to me the truth of this. It was astonishing to me how often this simple message was ignored. I saw dozens of patients over the years that had been treated for six months or more with oral iron before any thought to investigate. Young women menstruate, and menorrhagia or inadequate diets may explain anaemia, but this can only confidently be decided once a colonoscopy ( and endoscopy) have been done. In men there is no physiological reason to become anaemic, therefore no reason to delay investigation. Of course, as pointed out by “anonymous”, access to these investigations by uninsured patients is another issue that has to be addressed ,as delays of many months getting a colonoscopy in the public system are common.
People under 50 are not eligible for screening …as per government regulations …The patient can be offered a faecal occult blood test ” labelled NOT screening ” and full blood examination and iron studies …there are medicare restrictions on doing iron studies on the same test as a full blood examination ” …Once the diagnosis is suspected there is great difficulty getting into a general surgeon or gastroenterologist for colonoscopy , and now more than ever it appears that public or private patients are both having difficulty …the cost of private specialists and hospitals etc is a major barrier to early diagnosis of bowel cancer …. The way the health system operates generally at the moment is effectively blocking access to appropriate care and timely care for the majority of health conditions and the majority of the community … I think that over the counter ( both supermarket and pharmacy ) access to iron supplements for fatigue is seriously complicating the early diagnosis problem … iron deficiency being a symptom of blood loss rather than a diagnosis in its own right …
This article resonates with me. I am now retired but in my general surgical practice, any adult who presented with rectal bleeding, persistent bowel symptoms or iron deficiency anaemia got a colonoscopy. However I encountered several cases where colonoscopy had ( apparently) been refused by other practitioners on the basis of young age and very low probability of bowel cancer. In two of these cases ( both young women who had initially presented with anaemia) the cancer had advanced to incurable stage by the time of eventual diagnosis . Absolute tragedies and easily preventable. Some young patients with bowel cancer have genetic polyposis syndromes or family histories, but not always, and I never relied on the absence of a family history of polyps or cancer.