‘In the lead up to my bowel cancer diagnosis, I saw six different doctors in different specialties for different reasons. And I know I said what the symptoms were to each of them, and I just don’t think, it just didn’t dawn on anybody that this was even remotely possible.’
Bowel cancer patient, aged 35 and stage IV at diagnosis
Bowel cancer is now the deadliest cancer among young Australians aged 25-44. Rates are rising yet there is no routine screening in this age group to detect asymptomatic patients. Those who do present to their GP or local ED are often misdiagnosed or sent home. The lucky few who are referred for a colonoscopy face lengthy wait times in the public system that delays diagnosis and, ultimately, worsens outcomes.
Yet bowel cancer is preventable. Polyps grow slowly. As colorectal surgeon, A/Prof Graham Newstead explains, ‘It takes a minimum of five years in most circumstances to grow from polyp to cancer. We have time on our side and we have a findable, preventable or removable lesion to get rid of – if we know it’s there early enough.’
Unfortunately, many younger patients do not receive a colonoscopy and subsequent diagnosis until their cancer is advanced. This limits treatment options and survival rates.
Q-bital Healthcare Solutions recently held a series of roundtable discussions bringing Australian patients and industry professionals together. The event was supported by Bowel Cancer Australia and Healthcare week. Stories shared at this event revealed many mistaken assumptions, delays, bottlenecks and prohibitive costs which all delay diagnosis and affect outcomes in this age group.
A comprehensive approach to identifying bowel cancer among young people in its early stages would involve:
- Lowering the age limit for bowel cancer screening to asymptomatic patients
- Raising awareness of young-onset bowel cancer among GPs and other healthcare professionals
- Increasing referral rates for colonoscopy
- Increasing colonoscopy capacity to manage demand within acceptable wait times.
Young-onset bowel cancer
Once thought of as ‘an old man’s disease’, bowel cancer now affects younger people at higher rates than ever before. Today, 10% of new bowel cancer cases and 5% of deaths occur in people under the age of 50.
Of the top 10 cancers in Australia, bowel cancer is the only one to show an increase in mortality rates from 2008-2018 in the 45-49 cohort with rates predicted to rise into the 2020s. Sadly, 45% of these cancers were not detected until they had reached an advanced stage which narrowed treatment choices. That’s particularly poignant considering that bowel cancer can be successfully treated in 99% of cases if it is detected early enough.
Younger bowel cancer patients face unique physical, emotional, and psychosocial challenges ranging from fertility issues, sexual dysfunction and neuropathy to anxiety and depression, relationship breakdowns, job insecurity and debt.
These are men and women in the prime of life. They’re forging careers, raising children, paying taxes and contributing to their communities. They’re busy and they’re tired. They’re not really alert to the possibility of bowel cancer and, unfortunately for many of them, their doctors are not either.
Lowering the age limit for bowel cancer screening
Australia’s bowel cancer screening program targets people aged 50-74. Eligible men and women receive a home-testing kit, collect a stool sample and mail it to the lab for testing.
And it works. A 2017 study by Cancer Council Australia found that screening for bowel cancer can reduce deaths from the disease by between 15% and 25%.
It is now time to extend this screening program to younger age groups.
Age-related eligibility for screening programs sends a powerful signal about the risk of that disease in that age group. Lowering the age for screening would not only directly detect asymptomatic cases of young-onset bowel cancer but would also increase alertness among symptomatic patients and their doctors.
‘I wonder if in some ways the success of the screening program, which links it to the age of 50 and so on helps to reinforce that sense that it’s not something that typically younger people need to worry about.’
Bowel cancer patient diagnosed in early 40s
Back in 2018, the American Cancer Society called for bowel cancer screening to start at age 45. That call was echoed by the United States Preventive Services Task Force.
In 2020, Bowel Cancer Australia commissioned a report by demographer Bernard Salt AM, which found that extending bowel cancer screening to include 45-49 year olds would protect an additional two million Australians and help prevent bowel cancer deaths. As Salt stated, ‘Bowel cancer responds best to the kind of early detection offered by a screening program.’
It should be noted that all of the patients in the roundtable were under 45 at the time of diagnosis. Lowering the screening age to 45 would not help them directly but would help to raise awareness – and that alone can lead to increased action that prevents or detects cancer early.
One carer in the roundtable describes how her husband’s diagnosis prompted herself and several of their friends to see their doctors about potential bowel cancer symptoms and insist on a colonoscopy.
‘Had it not been for [her husband’s] diagnosis, [their friends] would not have thought twice about going to the GP to explain their very limited symptoms. Now they’ve all gone and had a colonoscopy and all ended up with some sort of polyp. Whether it was pre-cancerous or cancerous, something was there.’
Wife of young-onset bowel cancer patient
Awareness that bowel cancer affects younger people leads to life-saving action. Screening younger people is an important part of that process.
Raising awareness and increasing referral rates
Patients with young-onset bowel cancer may present to their GP with symptoms such as:
- Fatigue
- Low iron levels
- Blood in their stool
- Unexplained weight loss.
GPs are skilled in the art and science of differential diagnosis. They see many, many patients presenting with such symptoms who do not have bowel cancer but instead have anaemia, haemorrhoids, or high stress levels. They see pregnant women or breastfeeding mums who are understandably exhausted and whose low iron count or abdominal pain does relate to reproductive demands.
Yet many patients report that their GP considered all those possibilities but did not consider bowel cancer. As a result, they did not receive a timely referral. Some patients went back and pressed for more action, others sought out a different GP. Many felt that the onus was on them to make something happen and explore all the possibilities.
‘I did see three GPs. I guess it wasn’t on my mind either, having bowel cancer. But I just had sort of funny symptoms. I had abdominal pain one time, and I went to a GP and she looked at me and said, “Oh, what did you eat on the weekend?” And I said, “We went to the beach and had fish and chips.” And she made an assumption that I’m killing my liver in some way, by eating fish and chips, it was very strange. And have some blood tests and what have you, but nothing’s really urgent…and the blood test showed that I was iron deficient. And then the next GP that I saw, I took all of those results to, and he sort of said, “Oh yeah, iron deficiency, it’s not so bad,” and really wasn’t prepared to investigate it at all anymore.
‘And then the third GP that I saw, I had a bit of stress going on at my job, and I was incredibly anxious, more anxious than I think I’d been in my life. And I went to her about that, and then she looked at the other stuff and said, “Hang on a minute.” And then yeah, I did the sort of poo tests, which came back three for three positive, and a calprotectin test that was kind of the chart.’
Patient, 38 years old and stage 2 at time of diagnosis
Specialists, too, are not sufficiently alert to the risk of bowel cancer in this age group.
‘I’m presenting to the gastroenterologist, I think the fact that I was still breastfeeding with an active child, and I was a coeliac, I think that just distracted him. I don’t think it ever entered anyone’s mind that I might have had a cancer of any sort really.’
Mum of a toddler and a 3-month old baby, diagnosed aged 35
Bowel Cancer Australia recommends that doctors respond to the rising incidence of bowel cancer in under-50s by referring for all patients with symptoms consistent with bowel cancer for a diagnostic evaluation of the colon and rectum. Those symptoms include, but are not limited to, rectal bleeding, weight loss, change in bowel habit, abdominal pain and iron deficiency anaemia.
Improving access to colonoscopy
Once patients are referred for colonoscopy, they face a two-speed system. Those with private health cover can usually be seen quickly. Those relying on the public system face lengthy waiting times. One Tasmanian patient reports that, even before COVID, the wait time for a colonoscopy on the Apple Isle was 8 months.
‘The ideal time for a colonoscopy to be performed for a positive faecal alcohol blood test is 30 days, but maximum wait should be 120 days. Many patients are now waiting more than 6 months and some even longer. The potentially curable cancers are becoming more advanced cancers and get to a later stage and can be therefore in curable when they’re finally identified.’
A/Prof Graham Newstead
Australia now faces capacity constraints and a backlog of colonoscopy referrals for both surveillance and symptomatic cases.
As the Q-bital white paper on Australia’s Impending Bowel Cancer Crisis notes, ‘Planning for post-COVID-19 colonoscopy catch-up and ongoing capacity is urgently required to ensure bowel cancer doesn’t become the forgotten ‘C’ in the long shadow of COVID-19.’
Mobile and modular endoscopy suites offer a way to increase capacity, enabling more patients to benefit from timely and potentially life-saving access to colonoscopy. They are designed to accommodate a complete patient pathway, including on-board decontamination facilities for flexible endoscope reprocessing.
Having recently installed such a unit, Prince Charles Hospital in Brisbane expects to perform an additional 6,600 colonoscopies per year. That’s wonderful news for the increasing numbers of young people who need timely access to colonoscopy.
This information was obtained by Q-bital Healthcare Solutions following a recent roundtable event, bringing together patients and clinicians to explore barriers to spark creativity that drives change.
