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Table 3 Patient pathways before diagnosis of colon cancer

From: Explaining time elapsed prior to cancer diagnosis: patients’ perspectives

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Interval

From first symptoms to diagnosis

22

1 week

This person had been followed for nearly 30 years in gastroenterology for ulcerative colitis and a non-cancerous tumour. During a routine appointment, the gastroenterologist detected an anomaly and performed a biopsy. The diagnosis was announced less than a week later.

18

4 months

After a routine visit, her family physician ordered a biopsy, which was negative. However, after noticing blood in her stools, the person decided to see her doctor again.

“The biopsy was in six months. So he said to me, ‘Listen, go with the private system, $250, it will go faster.’ So, of course, you have a gun to your head, so you go… Finally, the results came back negative […] But in January, then… I had bloody stools. So… then, you start looking. So you go to the walk-in place, they treat you like you’re a bull in a china shop, because you’re not one of their clients! […] But you want an appointment because you have bloody stools! So then they tell you that you need an appointment. So then, the guy, he says to you… He points at you, and says to you, ‘Oh, right, in fact, you have…’ Well, yes! ‘Okay, then, you’ll need an appointment with a… a specialist.’ But there aren’t any until August. No, no, April… the month of April! So, there, because you were threatening. So then you go to see him, and he’s a specialist. He points at you and says, ‘You’re right, you’re bleeding.’ No, now wait a minute: that’s three visits, three times wasted, all because I have blood [in my stools]! But still no tests.”

Having been offered an appointment in four months for a colonoscopy, and being a French citizen, the person decided to go to France for treatment. There, within a few days, she underwent the necessary tests and was offered surgery.

20

7 months

The person had a family history of cancer and digestive problems. She took steps immediately when she began experiencing abdominal pain with intense fatigue. However, because she also had hormonal problems, her family physician did not order any other tests at her annual check-up. She returned several weeks later to the walk-in clinic, where antibiotics were prescribed. She went back to see her family physician and obtained a referral to a gastroenterologist, but delayed making an appointment, and when she eventually tried to make one, she found the wait time to be unacceptably long. Finally, because of increasingly severe abdominal pain and an abdominal mass, she decided to go to the emergency room. She was hospitalized, and was first diagnosed with severe anemia, then with an intestinal tumour.

16

8 months

The person consulted her family physician after considerable weight loss. Her physician ordered blood tests and sent her to an internal medicine specialist. After consultation, the latter referred her to a gastroenterologist, who ordered a colonoscopy.

“She sent me for a test on my stomach, because I had no symptoms! Everything was working well: the stomach, the… the intestines, it was just… The only thing was… the weight loss. So they started with the stomach: everything looked okay. After that, the next thing was to redo the colonoscopy.”

It was the wait for that last exam that took the longest (5 months).

19

12 months (symptoms + treatment for other health problems) + 6 months (investigation)

This person had been feeling very tired for several months:

“I was always tired and aching all over. So I decided to have blood tests to see what was wrong. They didn’t find anything. Then I asked my doctor to test for diabetes, because I had a family history, and that’s when they diagnosed diabetes.”

After several tests, the person was referred to several different specialists:

“Then, he said maybe it was a professional burnout. And that maybe it was also depression. He referred me to an endocrinologist and also to a psychiatrist for an evaluation to see if I was depressed. Which I did, and the psychiatrist said I was in a deep depression; but I kept on telling my doctor, all the doctors, or at least the three doctors I was seeing, that I was depressed because I was fatigued, and because that fatigue came from a physical discomfort that I had all the time, in my buttock and thigh. And then, they told me that it was probably the depression, that I had… physical discomfort because of that. That went on until February, when my buttock swelled up like a balloon and I went to the ER.”

In the emergency room, the patient received a diagnosis of perianal abscess. In a follow-up visit, the physician detected an anomaly and referred the patient to surgery. A few days later, the surgeon confirmed the anomaly and prescribed a colonoscopy, which was done a few days later and identified the mass.

17

More than one year

Two years before, this person had consulted a physician, who was concerned about her symptoms. He prescribed a colonoscopy, but the wait time was almost a year and the person gave up. She also refused to pay for the test in the private system. However, the symptoms worsened and she went to the emergency room. After several tests, the emergency physician informed her of the diagnosis.

21

Several years of symptoms and 7 months of investigation

This person had experienced sporadic bleeding over at least 10 years.

“In my case, it had been going on for a few years already, that I occasionally had bleeding… when I had a bowel movement. But everyone told me it was hemorrhoids.”

The last time she saw a physician, it was when she was accompanying her husband to a medical appointment. The professional prescribed a hemorrhoid cream for her.

“Then last year, my husband had some blood tests done that he had sent to his doctor […] So that time, I went with him, and I met the doctor. That doctor was actually pretty old. So I explained the whole thing to him. He said, ‘I’ll do a rectal exam, but…’ He told me it was hemorrhoids, but I said, ‘Still, I’d like to check this out further.’ So he did the rectal exam, but he said, ‘See, it’s hemorrhoids, we can feel them. I’ll give you a cream; it will stop.’ So, it wasn’t a problem. The cream definitely helped, and it stopped.”

However, a few months later, there was a lot of bleeding, and she saw a surgeon through her daughter, who was a nurse.

“But several months, a few months later, it started up again, and that time, there was really a lot of bleeding. One day I went to the bathroom and there was really a lot of blood, and I started to have doubts. You know, we don’t know why, but we have a little… And my daughter, she works at the hospital, and she had referred me to a doctor, anyway, who… Well, I didn’t know him myself, but she said he was good, and I saw that he had a private clinic. I telephoned, and I made a appointment. So I went there on a Saturday morning, I went to see him one time, and he did an examination, and he said, ‘Ah, it looks like hemorrhoids, but I’d prefer to send you for a colonoscopy.”

That surgeon saw her a few days later for a colonoscopy and then informed her of the diagnosis.