Table 2

Table of supplementary quotes

Theme 1—cancer survival before breast reconstructionSurprised, shocked by the diagnosis of breast cancer‘I mean, I didn’t know what I was walking into. I mean, the first two weeks I thought I was going to die because that’s how little I knew about cancer.’ (ID 106, M, IBR)
‘Sometimes having breast cancer is a major trauma in your life, right? Having cancer, it’s like one day you’re walking along and you think you’re living your life and you’re living it the best you can and you feel like you just get run over by a Mack truck, right? It’s a pretty scary and daunting kind of event that transpires, certainly for me.’ (ID 113, M, IBR)
Overwhelmed by the diagnosis‘I think my initial reaction to the diagnosis was shock, anger, sadness, complete and utter confusion because when I found the lump, I’m like, oh, it’s nothing. I have very large breasts, and I just assumed it was just lumps. They came and went, and I have no family history so I was completely gobsmacked. So, I think I was in a bit of a tailspin. I didn’t really know whether I was coming or going. I knew nothing about breast cancer.’ (ID 117, PM)
‘I went by myself to the general surgeon and I basically told him that he was talking French to me. I didn’t understand any of his medical terminology and I just looked at him and said so you’re telling me I have breast cancer and he said yes. It was kind of a blur after that. I just came home and felt quite empty and then got in contact with my kids and basically told them that we had to have a little family meeting and we all cried. At that point I didn’t know what stage I was at. Any little pain even in my back or anything I just felt like I was full of cancer and I thought I was going to die.’ (ID 125, PM)
Focus on cancer survival‘At one time I remember saying to the surgeon, telling him “I’m the kind of person who knows my own mind”. I’m pretty clear that at this stage in my life like a breast deformity or a no breast is not really that important to me. But what is important to me is that I completely eliminate any risk of cancer and that’s possible by doing it, by having a mastectomy.’ (ID 107, M, DBR)
‘So, for me, researching reconstruction, like, my mom was talking about it early on and I had to say, look, I have to get through chemo, I have to get through mastectomy, I have to get through radiation, I don’t even want to think about reconstruction until I’m close to that being a possibility.’ (ID 119, M, CR)
BR not always seen as part of breast cancer treatments‘The other, to me, again, from my perspective, is that the others weren't options. In order to get rid of the cancer, the chemo, the radiation, the surgery were needed, and the breast reconstruction is an option. It’s available, it’s out there, there's wonderful surgeons, there are amazing things that they can do, but it’s truly an option. It’s like cosmetic surgery, it’s totally an option, but again, information totally available and more than willing to go into the discussion, etcetera, with you over breast reconstruction.’ (ID 110, M, CR)
‘It’s almost like it’s … it is like a treatment for the cancer, but in a way it’s not. It’s sort of almost like it’s … I want to say it’s separate, but in a way it is because I almost don’t associate that with the cancer itself. This is just something I’m doing for me, to make myself feel better. But I don’t really associate … I know that’s why I need it is because I had the cancer, but I don’t really associate it almost as a treatment, if you understand what I’m getting at.’ (ID 111, M, DBR)
Theme 2—the influence of physicians on BR acceptabilityReliance on physician guidance‘I let him guide it, yeah, I let him guide it. Because at that point, when someone tells you, you have cancer, the person’s voice all of a sudden turns into Charlie Brown’s teacher, you know waa, waa, waa. You just kind of nod, and try not to lose your marbles right there in the room.’ (ID 122, M, C)
‘I knew nothing about breast cancer. Then when I was actually in the meeting with my doctor at the community Hospital Y, the surgeon who gave me the results from the biopsy that they did at that point said we could do a lumpectomy or a mastectomy.’ (ID 117, PM)
Variability of options presented by physician‘I was given a choice, you can either go this path with the lumpectomy with radiation or you can go this path with the mastectomy and no radiation. And it was totally up to me, there was no pressure to make a decision at the time.’ (ID 108, M, IBR)
‘I’ve said, the surgeon went through all the options, told me surgically what happens with all the options, told me … went through recovery time, what happens there, what probably treatments I would need after that.’ (ID 111, M, DBR)
‘So, she didn’t push me one way or the other, she [surgeon] kind of gave me the facts and the research, statistics.’ (ID 126, PM)
‘No, we didn’t really discuss pros and cons and she didn’t really discuss pros and cons of the surgery with me. She discussed the two options. She basically said that there were two options. She also did say that if we did a lumpectomy and when they were doing the surgery if there was something that she couldn’t do, then they would remove the breast and that’s fine.’ (ID 114, C, PM)
‘I wasn’t given that option, okay, and I wasn’t given that option.(…)I accepted that she, [the surgeon], said that, no, this is the process that will … I didn’t fight for … I didn’t say, no, I want reconstruction at the same time. I accepted, I accepted that her recommendation and the process for me to follow was the process for me to follow.’ (ID 110, M, CR)
Options of BR‘But actually, my surgeon actually said it’s easier to recover from if you get them … get the surgery done first, and then get the reconstruction done later.’ (ID 111, M, DBR)
‘Yeah, she [breast surgeon] was very, very adamant to say that. Don’t worry, yes, you get a mastectomy, this is what happens, but you get a reconstruction, it’s covered.’ (ID 121, C, PM)
‘I’ve said, the surgeon went through all the options, told me surgically what happens with all the options, told me … went through recovery time, what happens there, what probably treatments I would need after that. It was … and then mind you, I did ask him what his opinion was, I said, if it was your wife, what would you do. He said, the mastectomy, so I was like, okay, well, that’s what I was thinking, too.’ (ID 111, M, DBR)
‘He said that we’ll talk about it later, so he did not give me any information about reconstruction at that time.’ (ID 109, M, C, DBR)
‘Then the reconstructive, I had thought about it when I was told I could have it, and I could have it for free, I thought about it then. But I had asked my oncologist again, and he had said, you know what, why do you want it. I said, well, every female always has one bigger than the other anyway, and of course, where I got my cancer, had to be the smaller one anyway, which was annoying. When they take a lump out, as you know, you have to take tissue around it, so that took even more tissue. I thought about it, and then he had mentioned that if I did get reconstructive, that it might be harder to find behind the breast wall afterward. So, I just said, you know what, forget it for now.’ (ID 122, M, C)
Theme 3—patient’s shift to acceptance BR as regaining control ‘For me it was just again part of my whole psyche I think was about, there is a tactile or practical element that enabled me to feel that perhaps I had some measure of control in a situation that I really had no control over. I had no control over what the test results were going to show up. I had no control over how I was going to react to chemo. There’s so much about it you have no control over. Whereas sometimes if you make a decision, it feels like you’ve got some measure of control for some people. But that’s good, right? You don’t feel like everything is spiralling on you.’ (ID 113, M, IBR)
‘That’s about the only time you have control, okay. Like, during chemo, you do not have control, doing radiation, you do not have control, it’s just a process you have to go through. During surgery, you have control. That’s how I look at it. I mean, yes, you could turn down chemo, you could turn down radiation, you could, okay, there is control a little bit, but what I mean by that, the outcome of that is potentially death by not doing it, or a higher likelihood of death because the mass was just going to keep on growing. So, yeah, in a sense, you do have a little bit of control, but if your whole thing is that you want to get rid of the cancer, you have to go through those steps.’ (ID 110, M, CR)
‘For me, it’s just kind of just a bit of an F-U to cancer. Like, I’m going to get that back, and I’m not going to look in the mirror every day and see what I see, which is cancer took that from me. So part of it is, you know, a bit of a mental thing that I’m not going to let cancer deform my body, I’m not going to look in the mirror and see what used to be is no longer there because of cancer. I mean, for me that’s part of it. Just kind of regaining control and having my body back. So that’s a big part of a motivating factor for having it done.’ (ID 119, M, CR)
Closure through BR ‘But to me, having the reconstruction was, and that’s hard to explain to everybody when people were asking me, I would say, that’s the last step, that’s the final step, is the repair of all the damage that has been done over the last two years. It’s like, for me it’s like, okay, let’s repair this and then I can move on with my life.’ (ID 111, M, DBR)
‘It’s like, okay, well, now it’s time to make me completely healthy. It’s almost like it’s a … the next … almost like closing a door, kind of. You can close your door, and then get on with the rest of your life. This … the whole last two years will finally be over. Not the nightmare, but you know what I mean?’ (ID 111, M, DBR)
‘But I also looked upon it as sort of a way to move forward past the cancer diagnosis and further into my life after cancer in a hopeful way. It was like a statement to myself that we’re going to continue on and do the best we can with this.’ (ID 128, M, CR)
‘I think it’s really good because you’re getting something taken away but at the same time, you’re given something, an opportunity to have some type of breast back. So, they’re going to take away the cancer cells that are there because if we don’t, it could kill us. But having that opportunity to have breasts back and to be able to feel more normal and cancer free but yet have my woman … my breasts, things I identify with, to have that just is, to me, is a much easier process mentally for me.’ (ID 126, PM)
Theme 4—women’s need to justify BR‘Having or not having a breast is [a matter of debate] … I could live either way and then the whole aspect around vanity. I don’t know how people consider sort of having a breast or not having a breast whether it’s just a cosmetic aspect or not, different people’s views. There’s sort of a wide range of views. I think for young women having your breasts is really, really important. It’s part of their sense of self and body image and there’s a lot of things. I think when you’re older you may have a different sort of view of it. I mean there’s this whole aspect around any body part. If you lost a body part, any other body part, it’s got to both function and there’s this aesthetic aspect to it so you got to consider both of those things. But then with the breast maybe there’s this other aspect around sexuality, function sort of piece that’s built into it. I don’t know. Different people have different perspectives about how important a breast is.’ (ID 107, M, DBR)
‘There’s also the barrier in terms of, and I’ve sort of had to deal with this a little bit, there may be perceptions out there that this is sort of an undeserving use of healthcare resources, that’s number one. Number two, sort of the risking surgery … all the risks that are associated with surgery for what could be considered just cosmetic reasons, that sort of piece.(…)There’s people who have a bias, they’re like I would never do that. I would never risk my health over something so trivial as having a breast. People who have those biases … I mean you have some of that awareness that there are people who could think this way and you have to … if this is a decision that you’ve made you have to be strong in your resolve. Maybe not all women are as … they could be more influenced by those biases, prejudices, of views that are out there.’ (ID 107, M, DBR)
‘I know everybody thinks, well, just, why is it a big deal. It’s like, well, for me, it is a big deal because that’s what makes me … to me, that’s what makes a woman a woman, in a way.’ (ID 111, M, DBR)
‘The mastectomy, they all understood why I wanted to get the mastectomy. Actually they all said, oh, I would do that, too, if that was me. Reconstruction, Like I said, they … I don’t think a lot of them understand exactly what it is for reconstruction. They don’t … like I said, they’ve all said to me, oh, you don’t need it, you’re okay. But it’s like, they don’t understand the psychological part of it. Because I guess they think it … to them it’s like, no big deal. But it’s like, it is a big deal. Unless you’ve been in that situation, it’s… you don’t understand it. Like I said, the best way I can explain it, you don’t feel like you’re a full person anymore.’ (ID 111, M, DBR)
‘I think they have thoughts, maybe, of breast reconstruction and then they decide, you know what, being flat is not such a bad thing after all. The initial shock of seeing it, there's one thing, but then, true of so many things in life, you just get used that’s the way it is. I guess no different than if someone loses a limb, they also look at, do I want another limb, or a fake limb, or do I just go without? That’s what I would say.’ (ID 110, M, CR)
‘To me it was a very personal choice. It’s almost like what if somebody, if a woman wants to have an abortion or not, she’s not going to ask everybody around because there’s too many controversies and so it’s really a very personal issue. So, to me, the breast reconstruction was as personal an issue as if I had to choose whether to have an abortion or not.’ (ID 105, M, C, DBR)
‘Well, it’s … reconstruction is more on how you feel. It’s going to give you a sense of, it’s just feel good about yourself. It’s the same way when you dress up, and you feel, oh, I really like this dress, I feel good about it, even if some people think it’s gross.’ (ID 112, C, PM)
‘Most people say that I’ll get a free boob job, I’ll get an upgrade on my breasts and the fact that I’m going to opt for the DIEP is going to be a bonus, that I’ll have a tummy tuck all thrown into one.(…)And when they say things like, you’ll get an upgrade, free plastic surgery, or whatever, I just remind them that it is not plastic surgery it’s reconstruction.’ (ID 118, C, M, R)
  • BR, breast reconstruction; C, chemotherapy;CR, chemoradiation; DBR, delayed breast reconstruction; IBR, immediate breast reconstruction; M, mastectomy;PM, pending mastectomy; R, radiation therapy.