Patient experience of implant loss after immediate breast reconstruction: An interpretative phenomenological analysis

Abstract

Immediate breast reconstruction (IBR) is an integral part of modern breast cancer treatment. Our aim was to investigate patient experience with implant loss after IBR by using interpretative phenomenological analysis (IPA). We conducted semi-structured interviews with eight informants. We analyzed data according to the IPA flexible seven-stage process and four main themes were developed: immediate breast reconstruction as the indisputable choice, a difficult experience, an altered body: redefining normality, and trying to cope. The experience of implant loss appears to affect women for many years and might overshadow some of the benefits of IBR.

Background

Immediate breast reconstruction (IBR) is an integral part of modern breast cancer treatment, with the frequency of mastectomy patients receiving IBR considered a benchmark quality indicator for breast cancer care according to the European Society of Breast Cancer Specialists (EUSOMA) (Biganzoli et al., 2017). Nevertheless, there is little high-quality evidence supporting IBR as superior to delayed breast reconstruction (Biganzoli et al., 2017). IBR is afflicted with a higher frequency of complications, such as wound-healing problems, implant loss, and delay of adjuvant oncological treatment (Henry et al., 2017), and the effects of such complications need to be considered when choosing the timing of reconstruction. Complications can adversely affect patient emotional well-being, quality of life, and body image (Colakoglu et al., 2011; Gopie et al., 2013; Higgins et al., 2017; Potter et al., 2009; Spector et al., 2011; Timman et al., 2017); therefore, knowledge of the psychological effects of implant loss is a prerequisite for informed consent regarding IBR and improvement of care. Our aim was to investigate patient experience with implant loss after IBR using the qualitative method of interpretative phenomenological analysis (IPA).

Methods

Qualitative approach and research paradigm

We applied an open inductive approach and used IPA as the methodological framework (Smith et al., 2009), in which interpretations of phenomena are considered by both the informant and researcher in the analysis of how individuals make sense of their experiences within a social and personal context (Smith et al., 2009).

Study context (“thick description”) (Lincoln & Guba, 1985)

We recruited informants from one of seven departments of plastic and reconstructive surgery in Sweden. The Swedish healthcare system is a publicly financed welfare-type and needs-based system, and our department has a catchment area of ∼2 million people and performs ∼500 breast reconstructions annually. IBR is performed after both therapeutic and prophylactic mastectomies, with the latter performed in mutation carriers and patients with a high lifetime risk (>30%) of breast cancer. Implant loss after IBR ranges from 2% (Hallberg et al., 2018) to 11% (Hallberg et al., 2019) depending on the method used. In our department, patients receiving IBR are informed according to a standard involving receipt of both written and oral information on the risk of complications and potential consequences.

Ethics approval and consent to participate

This study is part of the Psychological Effects of Implant Loss protocol (ClinicalTrials.gov identifier: NCT04503018), and the Swedish Ethical Review Authority approved the study (2019-06214, 2020-04-729). We followed procedures in accordance with the Helsinki Declaration and Good Clinical Practice guidelines. We treated personal data in accordance with the General Data Protection Regulation, and all informants provided written informed consent to participate in the study.

Informants and sampling strategy

We used a purposive criterion-sampling technique, with the inclusion criteria specific to women aged >18 years and who had lost an implant after a mastectomy and IBR between 6-months and 10-years previous. Exclusion criteria were an inability to give informed consent, inability to speak and understand Swedish, presence of psychiatric co-morbidity, relapse of breast cancer, and/or presence of metastatic disease. We identified patients through the operation planning software, and recruited a small number of informants in order to allow for in-depth analysis and presentation of detailed extracts from the interviews. We estimated that five to 12 informants would be needed to answer the research question (Guest et al., 2006; Smith et al., 2009), and we performed analyses when six participants had been interviewed. We then interviewed two additional informants, and because no new themes arose from the analysis, we considered the receipt of in-depth data from eight informants sufficient. Informant demographics are provided in Table 1. All informants had received a new reconstruction and we interviewed them after implant loss.

Table 1. Participant demographics.

Pseudonym	1	2	3	4	5	6	7	8
Age (y)	42	59	30	43	56	36	48	48
Partner	No	Yes	No	Yes	No	Yes	No	Yes
Time since implant loss (y)	4	3	2	2	3	3	1	6
Breast cancer	Yes	Yes	No	No	Yes	No	Yes	Yes

Data collection and interview guide

A student in the Masters of Psychology program (AE) performed in-depth interviews, from March to June 2020. The first two informants were interviewed at the Department of Psychology, and the remaining six via a video conferencing application due to the COVID-19 pandemic. Interviews followed a semi-structured interview guide designed by three of the authors (AE, EH, and PB) and comprised open-ended questions regarding the entire reconstructive process and experiences associated with implant loss (supplementary file). We encouraged the informants to support their statements with examples, and asked follow-up questions (prolonged engagement (Lincoln & Guba, 1985)). We tape-recorded the interviews and professional medical secretaries transcribed them verbatim.

Data analysis

Two of the authors (AW and LW) independently analyzed data according to the IPA flexible seven-stage process (Smith et al., 2009) to ensure credibility (investigator triangulation (Lincoln & Guba, 1985)). The two authors discussed differences in interpretation until the most appropriate interpretation was determined. They continued the process of reading, analyzing, interpreting, and revising until the themes were considered to reflect the informant account and provide sensible interpretations of those accounts [11] (prolonged engagement (Lincoln & Guba, 1985)).

Researcher characteristics and reflexivity

Authors who had participated in the care of any of the informants did not interview, read, or analyze the transcripts in order to preclude influencing the answers and data interpretation as a result of their relationship with the informants and their own experiences of the events. All authors participated in the final organization of themes and sub-themes in order to ensure clinically relevant analysis and interpretation.

For the purpose of transparency, the authors include a clinical psychologist (LW), a psychologist in training (AE; at the time of writing), a professor in healthcare ethics (LS), a lecturer in psychology sub-specialized in qualitative methods (PB), and a consultant plastic surgeon and associate professor (EH). LW was not involved in the care of any of the informants, and AE, LS, and PB have no clinical experience with breast cancer or breast reconstruction.

Results

Four main themes were developed from the data according to supplementary input and feedback (Table 2).

Table 2. Themes, subthemes, and quotations.

Immediate breast reconstruction as the indisputable choice It is unquestionable that I have two breasts I never… I never doubted that I was going to have a reconstruction, that I can say. I was very sure of that from the beginning. (2) No, I really didn’t want to lose the breast. I wasn’t scared of the cancer at all, but… It was the loss of the breast that was my big concern. (8)
IBR was strongly recommended From the beginning, it was just about following their…, they had some kind of routine, so if you don’t ask they will follow it. (3) I didn’t know anything about those things [breast reconstruction]. I blindly trusted what they said… you trust the healthcare and you think that’s the right thing to do. So, I didn’t really object much. (7)
Insufficient information and the difficulty to grasp risks No, there wasn’t very much [information about complications]. It was only things that you like read on your own on the internet. (1) I didn’t demand any numbers [on complication frequencies]. But the way it was presented made me feel like it was very, very uncommon. (8)
A difficult experience
A dramatic and unexpected course I thought I was about to see the end of it when I first got the expander and knew that, ok, but it’s going to heal for a few months and then we’re just going to fill them and it won’t be long… Then it was really tough to realize that you were back to square one and had to wait another six months before you could put in a new [expander] and start the whole process again. (5) No it hadn’t crossed my mind that it could go this far, I never imagined I would have to go through this many operations, I’ve had a crazy amount of operations. God, no, I really didn’t know the risks were this big…I wasn’t aware of it. (4) A good, but not ideal, treatment I’m incredibly positive to what I’ve had [---] Everything, I think it’s been a positive experience. (2) I’m really happy I have done this, and grateful. Very grateful. I have nothing bad to say about the healthcare. It’s the best healthcare I have ever received. (4)
An altered body: redefining normality
Something is missing And it was kind of part of who I am in some way. You sort of…you choose your style of clothing, you choose everything based on it. It is what makes you “you” in some way… (2) When I was without it [the breast] for a period of time…That was when I realized how much they [the breasts] meant. When I lived an ordinary…Before the cancer, I didn’t think about what…what meaning the breasts had. They were kind of part of the deal [laughs]. When I was without [breasts], that’s when I started to think that…They are of big importance both for your womanhood [and] how you perceive your body and who you are as a person. (5) It is better to have “fake” breasts than no breasts at all ”Well, yes, partly it [breasts] has provided food to my children, I’ve nursed all four of them. But also to me as a woman…it has been a big part and a very erogenous zone to me…That, now, is completely gone. (7) There will always be minor things, there’s a lot of scarring after all the operations…It will never be totally natural. But I’m starting to feel that I can accept…Well, that this is what I look like. (3)
Trying to cope
Concealing the missing breast(s) And I have considerate colleagues who have bought two bras with padding [laughs] (…) She said, “I know you don’t want to go to work if you don’t have any boobs.” And well, you’re damn right about that. (1) Yes, it looks very weird. I definitely avoid going to the pool if I know that children will be there. (8)
The importance of being “strong” and “positive” I have never been… I haven’t cried once. Not once. No, not because of the cancer, nothing. (1) I have been working forward this entire time and have had difficulties to reflect on what I’ve been through. (5)
In need of support Everyone has always regarded me as a very strong person and that nothing can break me down… (…) Maybe they [her friends] would have listened and been the best listeners in the world, but maybe I didn’t give them the chance. Didn’t want to be a burden to people. (4) I have been through a lot in my life, so I’m quite strong [laughs]. I can work on myself a lot… I feel… How should I put it… I understand my own feelings quite well and can process them. But I also needed a lot of support. (3)

Immediate breast reconstruction as the indisputable choice

Most of the informants perceived IBR as the best option and an indisputable choice pre-operation. This theme contained three sub-themes.

It is unquestionable that I have two breasts

Most of the informants considered themselves as having a neutral and non-value-laden relationship with their breasts preoperatively and thought of them as “…just any other body part.” One informant did not like her breasts and wanted smaller ones (6), whereas another claimed that her breasts were the only part she really liked about her body (8).

I don’t think they had more meaning than any other body part then…it was just…they were just something that exist on the female body. (5)

When asked about what they thought of breast surgery in general, all informants claimed that they would never have considered cosmetic surgery, and some found it hard to understand why women would undergo surgery for the sake of appearance (1, 2, 7, and 8). Several of the informants distanced themselves from superficiality by stressing that they were not “vain” or “shallow” and unlike “other women” who care greatly about their appearance (2, 4, and 7).

Yes, I thought that I would never undergo any surgery just to improve the looks of my breasts; that was never an option. (1)

Despite their neutral attitude toward their breasts and skepticism toward cosmetic surgery, all of the informants expressed to some extent that breast reconstruction was an indisputable choice, although none were able to clearly express why. The reasons included worries about “not [looking] like everybody else” (4) and looking “weird” without breasts (1), that she was “supposed to have breasts” (2), that she wanted “smaller breasts anyway” (6), and that living without breasts was “not an option” (3).

No, no, never, it never even crossed my mind [concerning living without breasts]. I respect those who live without breasts, because there’re probably people who do, but no… (3)

IBR was strongly recommended

The majority of informants recalled IBR being strongly recommended by the doctors, to the extent that some thought that it was the only reconstructive option (7 and 2), whereas others acknowledged that they had received information regarding other strategies.

They tell you about different methods, what most people choose and what they recommended, so I totally based my decision on that. (6)

Approximately half of the informants perceived that IBR (1, 3, 4, and 8) would provide a better esthetic result and be more “practical,” as it involved fewer operations, no waiting time, and no period without breasts. One informant felt that she had been persuaded by the doctors to undergo IBR (8).

Insufficient information and the difficulty to understand the risks

Some informants described receiving adequate preoperative information (4 and 6), whereas most believed that information on possible risks was insufficient (1. 2, 3, 5, 7, and 8), although some had difficulty remembering the extent of the information (1, 3, 6, and 8). One informant stated that she received contradictory information from the breast surgeon and the plastic surgeon (7), and another felt that the doctors knowingly toned down the risks (8). Many informants stated that they did not really understand the implications of IBR (1, 2, 4, 5, 7, and 8), with several describing a belief that complications “…will not happen to you” (3, 4, and 7).

No, I don’t think so [on grasping risks]. I don’t think anyone can… no matter how much it is explained to you. I don’t think you can imagine what it truly means. (7)

A difficult experience

The informants described a long and difficult experience, including many operations, pain, uncertainty, and an altered body; however, most were content with the healthcare they received. This theme contained two sub-themes.

A dramatic and unexpected course

A majority of informants described the primary operation as a difficult experience mostly due to pain, for which several felt they had been insufficiently prepared (4, 5, 6, 7, and 8). The initial preoccupation with pain mostly diverted their thoughts from the physical changes.

You’re in a lot of pain then. It felt like painful bombs that were about to… [laughs] I was in a lot of pain after the operation. So the pain kind of became the focus. (6)

After a few post-operative weeks, most informants noticed symptoms of infection (1, 3, 6, 8, and 7), with two noting that they had contacted the hospital and stressed their worry but received instructions to wait (3 and 4). Approximately half of the informants described several attempts to save the implants before their removal, which elicited feelings of hope and despair during the process (2, 3, 4, and 8). One informant described a condition resulting in thoughts of being close to dying (1), and another stated that she was happy to have survived the infection (7).

There were variations in informant reactions upon understanding that they were going to lose their implants. Some mostly worried about managing their ordinary lives with jobs and children as a result of requiring additional surgery (1, 2, 6). Additionally, several informants highlighted the economic burden associated with a long period of sick leave (3, 6, and 7).

Right then, I could only think of how I would manage taking care of my family and was inconsolable and…almost panicked about how everything was going to work out. I thought more about that than about myself. (6)

Others were devastated by the impending implant loss, with some describing a feeling of being “back to square one” (2, 3, 4, 5, and 7). Some of the informants stated that the prospect of waiting several months for the body to heal before they could undergo more surgery led to feelings of uncertainty, emptiness, and worry (2, 4, 7). Some informants described this as the worst point of the process (2, 6).

…it was a trauma to me. I don’t think I’ve ever felt so terrible in my whole life. It was like…all of my joy, everything just died…within me…it felt like that. That was how traumatic it was to me then. (3)

Several informants stated that they could never have imagined how many operations they would eventually need, especially given the initial information and perception of IBR as the most “practical option.” Two informants that underwent prophylactic surgery described the feeling of “making themselves ill” and questioning their choice to have surgery: “What have I done? What have I done to myself?” (6).

Despite the difficult experiences, most informants did not regret their decision to undergo IBR (1, 2, 3, 5, 6, and 7), and some emphasized that they probably would have agreed to the operation, regardless of their receiving additional information and a better understanding of the risks (2, 4). Nevertheless, one informant regretted having the surgery, although this appeared to have more to do with removal of her breasts and not IBR as the process (8).

If you would have asked me today. Absolutely, I would have said yes [to undergo delayed reconstruction instead of IBR], but if I were back to square one, I wouldn’t have wanted to go without [breasts]. (4)

A good but not ideal treatment

The informants were overall pleased with the healthcare they received, with some even describing it as “fantastic” and a “very positive experience” (1, 2, 4, 5, and 6). Nevertheless, most informants wished that they would have received more information on possible complications and symptoms of which they should have been aware. Some informants were dissatisfied with how they had been treated, especially concerning their perception of having to be persistent in order to receive help (3, 7, and 8). Additionally, a few informants recalled feeling as if some doctors had treated them as “objects” and failed to cater to their need for psychosocial support (3 and 7), with several expressing a wish that hospitals had offered psychosocial support to women undergoing breast reconstruction (8, 3, 5, and 6), especially in the event of implant loss (2 and 3).

…well “now you’re done with surgery and you say bye bye”…no follow-up, nothing…Which I think would be very important, because…For a lot of people, I’ve realized, it takes a while before you let your body and feelings…reflect…and then not have that…that backup to have someone to talk to, I think many find that difficult… (5)

An altered body: Redefining normality

In a short period of time, the informants were confronted with body changes that gave rise to various experiences. Implant loss forced them to live with one breast or no breasts at all, despite their decision to opt for IBR. This theme included two sub-themes.

Something is missing

Most informants found it difficult to accept their flat or asymmetric chests following implant loss. One informant experienced her body as that of a “prisoner of war, mangled and flat” (7), another thought it looked “terrible” and felt “uncomfortable” in her own body (4), and a third indicated being “disgusted with herself” (3). A majority of informants found it difficult to look at themselves and grow accustomed to their altered appearance (3, 4, 5, 6, and 8).

…I’ve never been a person who has been standing in front of the mirror much. But then suddenly seeing that something was gone, something that should be there… and [I] felt less feminine. (5)

The neutral and non-value-laden relationship most informants reported having prior to IBR changed following implant loss. In fact, many described having not realized how important their breasts had been to them, their identities, and their feelings of womanhood (2, 3, 4, 5, 7, and 8).

I’ve really experienced what it’s like to not have a breast. So, I’ve really understood…Then I realized how important they were. Because in some way… I guess you take it for granted, you’re born in that body…so, that’s when I realized what they mean to me, it’s me and my femininity. (3)

It is better to have “fake” breasts than no breasts at all

Several informants expressed a sense of relief that the reconstructive process was finally or nearly over (1, 3, 4, 5) at the time of receiving new implants following loss of the initial implant(s); however, most expressed ambivalent feelings toward their new breasts. They were satisfied with how they looked when wearing clothes but expressed dissatisfaction with how the breasts looked and felt, describing them as “unnatural,” “fake,” “hard,” “weird,” “scarred,” and “not looking or moving like natural breasts” (2, 3, 4, 5, and 8). Several women grieved that their reconstructed breasts would never be anything like their natural breasts (3, 4, 5, 7, and 8).

I can’t say that they’re attractive, but they’ve got to be good enough…It’s better than not having any breasts all. (1)

Some informants reported having undergone corrective surgery or at least having considered it (5, 6, and 8) and contemplated during the decision-making process whether the surgery was worth the risk of complications. One informant who had undergone corrections described that the operations had made her more aware of minor details in her appearance. (6).

I have noticed that I have become a bit…I notice things, minor things, with myself in another way than I did before. I have done so many operations…it has changed how I look at my appearance completely (6)

Several informants stated that changes to their breasts negatively affected their sexual relationships, as they no longer represented an erogenous zone (4, 7, and 8). Others were more preoccupied with what their partners would think of them and doubted that anyone could think that they were attractive naked (3, 5, and 8).

I don’t have any sensibility left, so they don’t really have any function other than that they should look good. Everything else is gone. So, I guess that’s what I’m missing…They don’t have any personal function for me anymore, other than making me look like everyone else. (4)

One informant experienced a positive change to her sexuality, describing herself as “sexier” and “more confident” than before the surgeries (6).

Trying to cope

The informants had different ways of coping with the loss of both natural breast/s and the implant/s, as well as other aspects of their health and the treatment process. The theme included three sub-themes.

Concealing the missing breast/s

Following implant loss, a majority of informants did not want to expose their body and avoided such situations, including swimming pools and the beach (4, 5, and 6). One informant explained that despite having no problems with having only one breast, she did not want anyone else (especially children) to feel “uncomfortable” about her appearance (2). Two informants stated that they initially did not want to return to their jobs (1, 3).

It’s not like it doesn’t show that you only have one breast. There’s no way I could go to my job with one breast without…well…it gets really personal, too personal. It wouldn’t work. (3)

Several informants, both single and those in relationships, did not want to be naked in front of partners, which ultimately affected their sex lives (3, 4, and 5), and one informant avoided swimming pools following reconstruction with new implants (8). A majority of informants wore external prostheses following implant loss (1, 2, 3, 4, 5, 7, and 8), with several stressing the importance of the prostheses in allowing them to be seen by other people.

…I just thought it was horrible, there were two ugly scars on wrinkled skin. But I got those [external] implants that you can put in your bra, and I’m grateful for that, because then I, at least, didn’t have to explain to others and other people didn’t have to see me without breasts. (4)

Only one informant did not use an external prosthesis and claimed never having been offered one (6).

The importance of being “strong” and “positive”

Many informants believed that their ability to be “strong” and “positive” enabled them to cope with the situation. Although the specific meanings associated with being “strong” and “positive” were unclear, they appeared to involve “not being sad/dwelling on difficult feelings” and being able to “take care of oneself.”

But then, I must say… If I can say so myself, I’m a very…But I’m a positive person and…You have to take things as they come and try to do the best of the situation… (2)

Some informants claimed to have done well throughout the entire process (1 and 2), whereas others admitted to having experienced difficult feelings, such as sadness, stress, and despair. However, there were variations in the extent to which they allowed themselves to experience those feelings (5, 3, 4, 6, 8, and 7) based on a lack of time when having small children or a feeling that they should be “strong.” One informant felt pressure to be happy and grateful for recovering from cancer and not feel sorry for herself, which she implied made it more difficult to cope (8). Moreover, a majority attributed the implant loss to “just bad luck” (1, 2, 4, 6, 7, and 8).

…so I try to think positive, to not dwell on things. But then I have…Well, I do sometimes, and then it’s difficult. (7)

Although informants described being strong as helping them cope with the situation, a majority recognized that they struggled with processing what they had been through (3, 4, 5, 7, and 8). This involved dealing not only with the implant loss but also the cancer itself, the difficult healthcare process, and their altered bodies. However, those who had undergone prophylactic surgery expressed gratitude at the minimization of their cancer risk (3, 4, and 6). Several informants described having been so busy trying to progress through all of the operations that they lacked the time necessary to reflect on and process what they had experienced. One informant stressed that she was worried that the cancer would return while also experiencing guilt that her children might have inherited a high risk for cancer (5).

…I haven’t really thought about the cancer, I haven’t thought about it, or…I haven’t gotten there yet, since it has been difficult with the surgery. (7)

In need of support

There were variations in informant experience of social support, both regarding who supported them and what that support comprised. Many informants relied on their partners, children, parents, relatives, close friends, and coworkers, and one relied on her church congregation (6). Many informants mostly described practical support, such as help with grocery shopping, postoperative nursing, and transport to the hospital (1, 3, 6, and 7). Two informants with relationships found it difficult to receive emotional support from their partners (4 and 6), whereas others received emotional support mostly from close friends and/or their mothers (3, 5, and 7).

If I wouldn’t have had the opportunity to go to my oldest childhood friend, that I’ve talked to the whole time…I don’t know how I would have managed…It was necessary for me to get away and just have somewhere I was allowed to crash. (5)

Most informants had sought professional help from counselors and psychologists, a few in connection with the implant loss and others later in the process (3, 4, 5, 7, and 8). Some of the informants initially received a contact through the hospital (3, 5, and 8), with the rest actively seeking professional support on their own. Although some were satisfied with the help they received, several described the contacts as brief and unhelpful (4, 7, and 8). Several informants described having experienced depression during the process. (3, 4, and 8).

I got to see a psychologist before the first surgery, and I went to her a few times…But I live two hours away [from the hospital], so it wasn’t practical. So, then I went to a counsellor at the breast centre at home, and there…And I was there a couple of times, but then I was declared healthy [from cancer], so then I didn’t…Then you had to try to get help on your own from your local health centre. So, I was… I was thrown out [laughs] quite quickly (8).

Discussion

Our aim with this study was to investigate patient experience with implant loss after IBR. The informants described considerable suffering both from the loss of the implant and the loss of their breast/s, that in some cases persisted for several years.

Is the choice of undergoing IBR really indisputable?

The decision to undergo reconstruction appeared to be an easy and indisputable choice; however, the informants had difficulty describing why. This agrees with previous findings, by other researchers, who have reported that the decision to undergo breast reconstruction is often regarded as easy and obvious due to the dominant understanding that it is normal to want to have two breasts (Sandell, 2001), and that women might feel social pressure to undergo reconstruction (Cromvoets, 2003; Piot-Ziegler et al., 2010) based on a social construct suggesting that a real woman has two breasts (Kasper, 1995). However, only one informant reflected that women’s decisions to undergo cosmetic surgery may be influenced by norms of femininity. Other researchers have suggested that the choice to have appearance-altering surgery might be driven by a fear of becoming unattractive rather than a desire to be attractive (Henderson-King & Henderson-King, 2005). This agrees with informants fears of looking “weird” or “different from others.”

Despite the choice appearing easy and obvious, other findings suggest that it is actually quite complex. For example, it appeared important to the informants that they stress breast reconstruction as a medically indicated procedure justified by illness. Similarly, researchers have reported in previous studies that women describe feelings of guilt and shame to be associated with desiring breast reconstruction, as they perceive society as mostly regarding the surgery as cosmetic and unnecessary and implying a motivation based on vanity and/or a sign of impaired coping with body image and/or cancer (Cheng et al., 2018; Hill & White, 2008). This might explain why the informants in our study wanted to distance themselves from both cosmetic surgery and superficiality. Moreover, the complexity of the choice was reflected in their claims that they were not actually making an active choice but merely following doctor recommendations, with some even stating that they wanted the doctors to make the decision on their behalf. This is somewhat at odds with the emphasis on patient-centred care (Ho et al., 2013; Santana et al., 2018) in our hospital, where shared decision-making is central. However, even with person-centred care, shared decision-making should be an option and not obligatory.

Did the informants understand the extent of the process?

Our finding that several informants implied that they could never have imagined the implications of IBR agrees with previous studies where researchers have described how patients comprehend information, which suggest the presence of optimism bias, and that people generally view procedures as less risky for themselves than for others (Avis et al., 1989; Weinstein, 1989). This complicates decision-making (Lloyd, 2001).

Researchers have suggested that surgeons sometimes present IBR as a more positive option than other forms of reconstructions (Mahoney et al., 2020), and emphasize that breast reconstruction is an opportunity for the patient (Cromvoets, 2003). Additionally, doctors can understate the risks and overstate the simplicity and swiftness of a given procedure (Mahoney et al., 2020). Similar tendencies were described by the informants in the present study. A basic prerequisite for patient autonomy and shared decision-making (Ho et al., 2013; Santana et al., 2018) is that the patient understands the risks and benefits associated with an intervention, with this requiring unbiased, honest, and evidence-based information.

A dual loss?

Women experience a dual loss, first when losing their implants and then later upon realization that the reconstructed breast(s) will never fully resemble their natural breasts. Therefore, the experience of loss is multiplied relative to that associated with a simple mastectomy that results in loss of “only” their natural breast. The informants in our study described considerable psychological and physical suffering related to the loss of the implant itself, which added to feelings associated with the loss of the breast(s). Additionally, many informants described feelings of hope and despair involved in trying to save the implants before they were removed and a fear of physical harm in connection with the loss itself. Moreover, people might suffer more significantly in the loss of a benefit (e.g., a breast reconstruction) than from never having acquired said benefit (i.e., loss aversion (Kahneman et al., 1991); in this case, having a simple mastectomy).

Furthermore, the informants had not realized how important their breasts were to their identities and their womanhood until they were gone, finding that breast loss resulted in a temporary “loss of womanhood.” This is similar to what researchers have found in a previous study, where women were surprised by the emotional impact of mastectomy and the extent to which it actually affected their body image (Hill & White, 2008). In our study, most informants expressed dissatisfaction with their bodies being flat/asymmetrical and subsequently developed avoidance coping. It did not appear that the informants experienced actual negative reactions from others but rather feared they would. This is similar to previous findings, where patients have been described by researches to have fears of reactions from other people to their mastectomised bodies (Cromvoets, 2003; Piot-Ziegler et al., 2010).

Despite the informants indicating that they were somewhat satisfied with their reconstructed breasts, they grieved the loss of their natural breasts. This agrees with previous findings by several other researchers, where it has been described to be a painful experience with loss associated with body modification, specifically involving an unnatural reconstructed breast (Fallbjork et al., 2012; Hill & White, 2008). In fact, both the present study and another previous report suggest that although a reconstruction might help women to visually appear normal, the women worry that those in her vicinity will notice that the breast is unnatural (Ehlers, 2012). Many reconstructed women are afraid of being exposed as having “fake breasts” (Sandell, 2001), resulting in their feeling abnormal, avoiding certain situations (Ehlers, 2012), and having concerns regarding sexuality and potential difficulties in finding partners post-reconstruction, as was the case for several informants in the present study.

Did the breast reconstruction rehabilitate the informants?

A breast reconstruction is often expected to rehabilitate women both psychologically and emotionally and help them overcome cancer, as well as make them feel whole again, to promote their return to a normal life (Cromvoets, 2003; Sandell, 2001) (i.e., reconstruction of the self (Cromvoets, 2003)). However, this was not supported by our findings, as many informants reported suffering after completion of the reconstructive process. Additionally, multiple informants reported ambivalent feelings toward their reconstructed breasts, grieved that they would never be like natural breasts, and described difficulties with accepting their altered bodies. Moreover, several informants still struggled with accepting their diagnosis with breast cancer, with some implying that the reconstruction made it more difficult to cope with the cancer, as their focus had shifted toward the operations. It should be emphasized that the majority of these operations have been cosmetic corrections requested by the patients. Therefore, it could be hypothesized that offering multiple corrections, resulting in waiting periods for multiple procedures, might inhibit the rehabilitation process by shifting the focus away from resolution of cancer-related risks to the operations and breast-related esthetics.

Furthermore, the difficulty of informants with processing their experiences appeared to derive from a lack of psychosocial support. Although many sought professional help, few were satisfied with the help they received, and several stressed the need for better psychosocial support within the specialized care setting. A majority of informants also employed conversational idioms, such as “thinking positive,” often used by cancer patients and possibly indicative of inadequate coping (Wilkinson & Kitzinger, 2000). It is possible that many informants avoided difficult feelings when trying to be “positive” and “strong,” which might have contributed to psychological distress and impaired coping. These findings suggest that psychological treatment within a specialized care setting could benefit women affected by implant loss. This should be explored in future studies.

Methodological reflections

To ensure that the results reflected informant accounts, the data were initially analyzed by one author (AE) under the supervision of PB. LW under the supervision of EH then performed an independent audit of the analysis to ensure the credibility of the final account. The independent audit resulted in some revision of the themes. IPA is an interpretative method that requires an investigator to make choices regarding what to focus on and include in the analysis, as well as interpretation. This suggests that there are multiple ways to interpret data, and that results should be considered as outcomes from making sense of the interpreted data.

A dilemma experienced during our interpretation of the data was the difficulty in distinguishing between how the informant was affected by loss of the breast implant from the impact of the cancer. It was not always possible to separate these phenomena, as the chain of events, including diagnosis, mastectomy, and plastic surgery, together comprised the narrative of the informant.

Conclusion

Our findings suggest that the choice of undergoing breast reconstruction is a complex process, the extent of which might frequently be unclear to women. The considerable risk for complications in connection with IBR and the significant dual suffering resulting from potential loss of both the implant and a breast might warrant a careful approach from doctors, especially in patients with a high risk for complications. The experience of implant loss appears to affect women for many years and might overshadow some of the benefits of IBR. Furthermore, physical and emotional rehabilitation after breast cancer/prophylactic mastectomies might be far more complex than just replacing lost body parts; therefore, there seems to be a need for routines regarding psychosocial support before and after breast reconstruction, especially in cases of implant loss.

Acknowledgments

We are grateful for the invaluable contributions from the women who participated in this study. We also want to thank breast care nurse Ann-Chatrin Edvinsson for help with recruitment of the participants and clinical psychologist and PhD student Marizela Kljajic for contributions during the ethical review of the project. We are also in debt to our excellent medical secretaries for transcribing the tape recordings.

Data availability

The datasets generated during the current study are not publicly available due to the patients’ privacy but are available from the corresponding author on reasonable request.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The study was funded by grants from The Swedish Cancer Society (21 0279 SCIA) -EH, the federal government under the ALF agreement (ALFGBG-724171)-EH, The Percy Falk Foundation (Stockholm, Sweden) for research into prostate cancer and breast cancer -EH, and The Swedish Breast Cancer Association-EH. The sources of funding had no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript.