Table 2 Patient pathways before diagnosis of breast cancer

15

1.5 months

This person felt a lump on December 4. She worked in a plastic surgery clinic. She pushed to get an appointment with any of the gynecologists at her gynecology clinic right after the appearance of the first symptoms to obtain a mammogram. She saw the gynecologist one week after the first symptoms. The physician ordered all the tests at the same time, including a surgical consult. She underwent all the investigative tests on the same day. She received her diagnosis less than one month after the positive mammogram.

13

4 months

The person felt a lump during breast self-examination. She talked about it with her family. She went to her gynecologist right away for a mammogram and was tested. Her mammogram was not very clear, so the physicians immediately pursued the investigation further.

“But that night, I talked about it with my husband and my daughter, because you always feel a bit silly, right, when… You’re always worried about upsetting people. Anyway, for me… that’s how it is. And then they said to me, ‘Listen, don’t hesitate…” (281, p. 7)

The patient consulted in the private sector. Because the mammogram results were inconclusive, the radiologist proposed an ultrasound on the same day:

“Finally, well, when I went to XXX on June 16… they did a mammogram [inaudible 08: 15]. They didn’t see anything, so the radiologist who saw me said, ‘I’d like to do an ultrasound right away, but there is a cost.’ Of course, I agreed. So, in the ultrasound they saw something. And then, she said, ‘To be sure there isn’t a cancer growing there… I advise that you make an appointment with us for a biopsy.’ So you see, that meant that, that would have been on July 14, and then, on July 14, the biopsy was done and then I left on vacation. I knew that my gynecologist was also on vacation. And when I got back on August 4, I had a call right away [inaudible 08: 53] from my gynecologist’s secretary saying that she would like to see me on the 8th, which was a Monday. And then, on the 8th, she confirmed that it was cancer.” (p. 8)

The biopsy confirmed the result. This patient’s diagnosis was confirmed on September 6, two months after her physician ordered the investigative testing.

14

3 months

This person had a mammogram as part of a breast cancer screening program. She had no symptoms, but her mammogram was positive. Her family physician called her 7 to 10 days after the test. She also received a letter from the Screening Program to verify that her family physician had contacted her. Her physician sent her for an ultrasound in the private sector, saying that it would be faster. Her physician received the results and encouraged her to have a biopsy. The patient got her diagnosis a little more than two months after getting the mammogram results.

12

4.5 months

This woman felt a lump in her breast in the summer. As she was eligible for the province’s breast cancer screening program and had moved to a new region, she contacted them to receive a new mammogram invitation letter. The mammogram was done on November 7. One week later, the laboratory telephoned her to convey the results.

“I had already felt a little lump, about the size of a grain of rice, say, no more than that. That was in the summer of 2011, but I ignored it for all kinds of reasons: my work, I…, I…, I had five coworkers who had resigned. It’s a very difficult department, complicated, and it’s becoming impossible to recruit people because they’re afraid of going to work there; so I neglected thing so as not to…. In the end, I was all alone.”

When the patient received a call informing her of the positive results of her mammogram, she was advised to undergo the usual testing. She refused, because she felt it would take too long, and decided to consult in the private sector, where she got an appointment three days later.

The time between the first positive mammogram and the diagnosis was three days. It should be noted that this person is a nurse who had worked 16 years in a hospital oncology service.

“I know very well how things work, the wait times, and in fact I’d been able to see, there, how the system had deteriorated over the past 30 years. But I still had some professional contacts in the specialities. If Dr. Y hadn’t been here, I would have gone to see another in the same hospital that I know well. Or another one at xxx hospital, who’s in radio-oncology, but who would have put me in touch with a hematologist-oncologist. In short, I was well connected. So I had certain advantages, I was well connected, I bypassed the wait times that everyone else has to put up with, I imagine, but… well.” (p. 10).

9

6.5 months

There was a history of breast cancer in her sister. This person did not have a family physician but was followed by a gynecologist. The gynecologist ordered a routine mammogram. The patient postponed the test since she did not like the test:

“Having a mammogram is no fun. So I had the… I had the paper, so I went a couple of months without… you know, before making the appointment. At one point, I said to myself…” (p. 3)

Her gynecologist called her to tell her that her mammogram was positive and ordered a second mammogram. Shortly after the second mammogram, the patient had an ultrasound, which confirmed the presence of a mass. A biopsy was ordered. She requested an appointment. She called three times and waited two months before someone called her back to make an appointment for the biopsy on August 3. The time between the results of the first positive mammogram and her cancer diagnosis was more than four months.

11

8 months

This woman felt a lump, or more of a discomfort in her breast, in June.

“In the month of June, I felt a little lump… I would say, a little discomfort, there, in my breast. But, hey, I said: I often have… You know, I had been menstruating for six months. After the… after my… my endometrial ablation, I menstruated for six months, which was normal for an operation like that. And sure, there was something going on in my breast that was bothering me, but I said, hey, it’s my period, it’s my… my hormones, well, you know. Because I have large breasts, it’s… I had gotten used to that over the years. So I didn’t make much of it, except that in June, my husband’s cousin died of breast cancer. Then, it was like a light went on. Then I said, okay [respondent’s name], maybe you need to see a doctor. That was in the month of June. When I got back from travelling, in October or November… because in September, I felt my lump. We were outside the country. Then, I really felt it, and it was… It was starting to be a little painful, my lump. So then, I said, when I get back from this trip, I definitely need to see a doctor. I went to the doctor, and got the diagnosis in the month of… on January 18, 2011.” (001, p. 1)

When she tried to make an appointment with her family physician, she was told he was on vacation. She then decided to consult her gynecologist, who ordered a mammogram. The time between the appointment with the gynecologist and the positive mammogram result was about one month. Her gynecologist received the mammogram results on the day of the exam and sent the patient for an ultrasound. The radiology centre where the mammogram was done was in the same building as the gynecologist’s office. After the results, her physician sent her for a biopsy. The time between the positive mammogram and the cancer diagnosis was nearly three months.

10

13 months

There was a family history. This person had a family physician whom she saw regularly and who prescribed an annual mammogram because of the family history. This person had a breast lump since 2006. The positive results of the mammogram were transmitted to her family physician, but no one notified the patient of the positive result. She learned about the result 11 months later in a routine visit to her family physician.

“Aside from having a breast lump that didn’t hurt, I was doing everything right, and having mammograms, and all that. That’s what made me so angry in this whole story, it’s that I wasn’t negligent. And even today, a year later, I can’t accept it! I tell myself, it’s not right! There was something somewhere that… There was someone who didn’t do their job.” (230, p. 1)

Her physician noted that the positive mammogram had been done almost a year before and encouraged the patient to start the investigative testing quickly.

“So then, she was really angry! She said to me, ‘Now, you’re going to have another mammo. Not in six months, not in two months: Now! And that’s when things started to happen. And when I went to the clinic, they didn’t even want to give me an appointment because it was summer. I said to the woman, I said, ‘Madam, I need an appointment for a mammogram.’ She said, ‘Madam, we don’t have any openings now! Call me in September.’ I said, ‘You don’t understand! It’s an emergency.’ ‘Well, what do you want me to tell you?’ (p. 2)

Her family encouraged her to consult in the private sector. The patient had to insist to get an appointment for the two exams that had been prescribed. The fact that her ultrasound was done by a physician who was affiliated with the same hospital as the patient accelerated the biopsy appointment.

Interviewer: “OK. So you went through the private sector.”

Respondent: “Yes, I had to pay but… There, my husband said, ‘Listen’ he said, ‘it’s your health, I think it’s worth it!’ So I went. They did the mammogram and they told me, if we need a clearer image, we’ll call you within 10 days.’ But they didn’t call me. But I had kept the original of my prescription, and on that prescription, my doctor had written ‘mammogram plus ultrasound’. So I called and asked for an ultrasound appointment, and at first the woman didn’t want to give me an appointment! She said, ‘You weren’t called.’ I said, ‘No, you didn’t call me. But my family doctor wants me to have this ultrasound.’ So I got an appointment, and to my surprise, when I went there, on August 24, it wasn’t a technologist, it was a doctor, a radiologist. She started doing the ultrasound, and she said, ‘Oh,’ she said, ‘you’re not made like everyone else, you, Madam!’ I said, ‘What do you mean by that?’ ‘Well, anyway,’ she said, ‘you’re not made like we see in books.’ I said, ‘Yes, and so?’ She said, ‘You have a mass that’s very large and inflamed.’ And she said, ‘That’s not good!’ So there, I started to panic a little, I’ll admit! And then she asked me, what hospital do you usually go to?’ ‘Well,’ I said, ‘My children were born at XXX.’ She said, ‘Great, that’s where I work. I’ll see you tomorrow for a biopsy.’ And there I was, alone, and she said to me, ‘I think it’s cancer.’”(p. 3)