Table 3

Representative quotations illustrating barriers to care for endometrial cancer patients

BarrierRepresentative quotations
Administrative“My family doctor referred me to a gynecologist and he put on it ASAP. I hadn’t heard back so I called the gynecologist’s secretary and she said, ‘Oh, she said, I haven’t even had time to look at the faxes yet.’ And she said, ‘Well, if you’re a new patient, you’ve got to wait 2 to 3 months before you see the doctor anyway. So, you know, it just didn’t go good at first (ID 2).”
“Every day that went by, it wasn’t happening. I would call her office. I would ask if the referral had been made. They would say yes. I would call the places that the referral was supposed to be made and they would tell me they hadn’t received my referral and then I would go back to her. So, for those weeks, I was in her office almost every other day and I was on the phone to her office, every day (ID 3).”
“I already told you that the gynecologist did not send all of the information down to Princess Margaret, so that was a delay (ID 5).”
“It’s a bit confusing going through the system. You’re dealing with so many people who all have a specialized function and it would be nice to say, okay, so [the doctor] has a nurse, she has an assistant, these are the people you call for booking appointments, you know. There’s just so many people to deal with (ID 6).”
Geographic“By the time we got home with the traffic and all that, it was like 2 o’clock in the morning, by the time we went to bed. And we had got up at 6 o’clock to pack the truck, so. I mean, you know, it was pretty brutal. So, that’s why we decided that, yeah, we’re staying in a motel, even if I can’t afford it (ID 14).”
“There was a lot of stress and a lot of doctors meetings and appointments in Toronto, which isn’t where I live and I’m not familiar with (ID 12).”
“How was the process? Other than having to travel 4-1/2 hours, um, I… I had no issues. Like, I said, other than trying to find a motel and, um, and, the traveling (ID 14).”
“If they’re out of Toronto, my suggestion would be that they take them in the night before instead of the morning of. Because it’s difficult especially for somebody that, you know, has to get a ride there. Like, that’s the difficult part, right. That was the hardest thing about the whole thing, really. Was getting a ride here (ID 4).”
Financial“I try not to eat what the dietitian say I’m not to eat, but, you know, sometimes you just don’t have the funds to buy what you need. So, sometimes whatever you’re not to eat, that’s the thing you’re eating. And, then, you know, you put on the weight and it’s very hard to take off. So, that is my problem (ID 9).”
“It’s just, I mean, you know, financially it’s really hard for a person. They wanted me to come originally on the 15th. Well, I don’t live just across the street, you know. I mean, it costs big dollars. You can’t get a seat sale, because, you know, you’re not far enough down the line. And then to stay in a hotel. You can’t get there early enough, because they want you there for 7:00 in the morning and there’s no flights, so you have to go the night before. It’s like, with everything. And, you can’t get a hotel room for less than $230 a night (ID 7).”
“I’m just like everybody else, I live from pay cheque to pay cheque and I have no short-term disability, only long-term. So, you have to go on unemployment. And, you have a waiting period (ID 12).”
“The parking is killing us, you know, at the hospital and that. Big bucks. Oh my God. Yeah (ID 13).”
“The Northern Ontario Travel Grant did help offset a little bit, especially with the traveling. But I mean for the motel, well no matter where you go, they’ll pay only a set amount. So that did help us a little to offset but it was frustrating (ID 14).”