Table 3 Patient-reported barriers to timely diagnosis described in early-onset colorectal cancer patients’ personal narratives published online in Australia, New Zealand and United Kingdom: key themes and illustrative quotes

1. Clinical assessment

1.1 Health provider response to age < 50

“The biggest challenge I faced as someone diagnosed with bowel cancer under 50 was getting my symptoms taken seriously by doctors, even though my father had had bowel cancer with liver metastases … The occasional blood kept happening, so I spoke to a doctor again. It was again brushed aside as probably being haemorrhoids, but the GP investigated and was unable to see any. I was prescribed suppositories in case there was a haemorrhoid higher up in the rectum... but the intermittent blood in the toilet/in my poo continued, so I told a doctor again. I was informed it was unlikely to be anything sinister because I was my early forties, plus I wasn’t experiencing any change of appetite or pain, or constipation.”

F. Age: 43; Stage: not reported

1.2 Prioritisation of common conditions

“Numerous symptoms led me to that colonoscopy; urgency, frequency, bleeding, bloating, pain etc. I had had these symptoms for years, however they were always explained as something else, ovarian tumours, IBS, back to back pregnancies, difficult deliveries and/or post-natal complications. No one ever suspected Bowel Cancer …”

F. Age: 34; Stage III

1.3 Adequacy of investigations

“I initially had a faecal test which didn’t detect anything, and then a CT Scan showed some swelling in my sigmoid colon and was diagnosed as having Colitis (swelling of the bowel). It apparently presents similar to a tumour on a CT Scan, but a tumour was ruled out given my age.”

M. Age:35; Stage: III

2. Continuity of care

2.1 Referral delays

“Eventually, after a good few months, I worked up the courage to go to the GP. She asked me a few questions and told me that I was too young to worry about it being cancer and as I have had a child, it was probably haemorrhoids …. A few months later, with more bleeding I noticed that there was mucus now in my stool and I decided that I wanted to get it looked into. That doctor wouldn’t give me a colonoscopy so I went to a different doctor and was forceful in asking for a referral to a colorectal surgeon to have a colonoscopy.”

F. Age 36; Stage III

2.2 Continuity across multiple providers

“I saw several different doctors in the 16 months at my large and busy GP practice. My persistent symptoms were not connected together and I was essentially ‘lost’ in the system. I’m left with questions about ‘what if’ I was diagnosed earlier.”

F. Age: 26; Stage: III

2.3 Wait times for colonoscopy

“I wasn’t in any pain. In fact the only symptoms I had was sporadic blood showing up in my poop and some constipation and cramps. I’d been doing a bit of international travel with work and so the first doctor I saw thought I might have picked up a bug. I had a stool test but it came up inconclusive. About two months later a second GP thought I might have a cut in the lining of my rectum and sent me home with some cream. Finally, a month later my local GP recommended me for a colonoscopy … I would have had to wait a few months in the public system so I decided to get mine done privately (… ouch). But that ended up being the best decision I ever made.”

M: Age: 47; Stage III

3. Interpersonal care

3.1 Tensions over symptom seriousness

“Advertising tells us that if we notice blood when we go to the toilet, we must tell our doctor … I was embarrassed about it but knew that it was necessary to tell the doctor, especially since my father had had bowel cancer. To my surprise, my symptoms were brushed aside as probably being nothing - maybe a scratch or irritation.”

F. Age: 43; Stage: not reported

3.2 Self-efficacy

“I would often get severe stomach cramps and only a foetal position with pressure on the area would help make it go away. I went to the doctors numerous times over the years. But I always left feeling stupid and that it was all in my mind as they could never feel or find anything wrong with me.”

F. Age: 31; Stage IV

3.3 Reassurance referrals

“After numerous visits to him, he referred me to see a gastroenterologist. The gastroenterologist thought that this was due to the reason that I was under a lot of stress, the fact that food intolerances get worse when you are stressed, and the bleeding would eventually stop. Then I got referred to see a dietician. I got given a whole lot of food that I should avoid. I’ve noticed that previously my bleeding would be on and off, but this time, it was there consistently, every day, with a severe pain on the right side of the stomach. I had to see my GP again, I cried at his office, saying I was worried I could have bowel cancer. He reassured that this was nothing serious. Another week went by and I had to see the GP again, tears were pouring down my face as I told him that I thought something was not right with me. I got asked to see the gastroenterologist again, she in fact laughed at me and said that people with my ethnic background, my age and being a female had a very low chance of it. She said she would put me on an elective list for a colonoscopy and that there was no reason to worry.”

F. Age: 38; Stage III