Women’s Recovery Experiences After Breast Cancer Reconstruction Surgery

Abstract

Many women with early-stage breast cancer choose breast reconstruction following mastectomy with the goal to improve physical and psychological quality of life. Breast reconstruction procedures vary in surgical complexity, types of postsurgical complications, and time to recovery, all of which can affect a women’s well-being. Although there is a growing body of literature on the satisfaction with aesthetic outcomes following breast reconstruction, there is little research addressing the recovery process. This qualitative study explores woman’s physical and emotional recovery experiences. Findings may be useful for improving educational and counseling services for women who undergo breast cancer reconstructive surgeries.

INTRODUCTION

Women may choose to have breast reconstruction following mastectomy for breast cancer with a goal to improve quality of life physically and psychologically. The diagnosis of breast cancer and subsequent treatments, which often include mastectomy, can be profoundly distressing for women. A woman’s recovery can be greatly affected by physical changes that occur and by emotional manifestations that may emerge as a result of having breast cancer. The loss of one or both breasts can affect a woman’s self-esteem and body image, as well as be a frequent reminder of the breast cancer experience. Psychological distress may result whenever a woman looks at herself and sees her breast/s gone and her chest marked with surgical scars. Thoughts of breast cancer can be elicited whenever she bathes, gets dressed, shops for clothing, and while engaging in intimate activities. Breast reconstruction may be a viable option for women to consider as they contemplate how to improve their well-being while faced with the loss of their breast/s. When aesthetic outcomes are satisfactory to women, breast reconstruction following mastectomy can be an integral part of the whole healing process.

Today, many women with early-stage breast cancer are opting to have uni- or bilateral mastectomies and breast reconstruction as part of their primary treatment and for prevention of contralateral breast cancer (Katipamula et al., 2009). In fact, there has been a 9% increase in the number of reconstructive breast surgeries over the past year with the highest percentage of women choosing tissue expanders and implants (American Society of Plastic Surgeons, 2010b). There were 86,424 breast reconstruction surgeries performed in 2009, and the two most common surgeries were tissue expander with implant, approximately 57,000 performed, followed by roughly 9,300 Transverse Rectus Abdominis Muscle (TRAM) flap procedures following breast cancer surgery (American Society of Plastic Surgeons, 2010a). With regard to age distribution, the highest number of breast reconstruction surgeries was performed in the age group ranging from age 40 to 54 years followed by the age 30 to 39 years group (43,271 and 10,560, respectively).

There are three major types of breast reconstruction: a saline or silicone implant, a breast made from autologous tissue (e.g., TRAM flap), or a combination of autologous tissue and implant, which is often done when muscle from the back is used (Latissimus Dorsi Myocutaneous flap) and is often referred to simply as a back flap. Women may choose to have immediate breast reconstruction or delayed reconstruction. The procedures vary in surgical complexity, the number of surgical procedures needed, time to recovery, types of complications, and aesthetic outcomes. Physical recovery time is effected by many factors, especially in relation to the actual surgical procedure itself, the degree of pain and fatigue experienced, whether complications such as infection, delayed wound healing, capsular contraction (hardening or distortion of the implant), or reconstruction failure occur. Although many of these physical issues can be remedied they often prolong the recovery period. If women are adequately informed about potential complications they may be better equipped to move through the physical recovery phase. Emotional recovery is a more complex experience that deals with the woman’s reaction to the cancer itself, the loss of one or both breasts and how she deals with thoughts of the breast cancer returning. Physical and emotional recovery can have a tremendous impact on quality of life and survivorship beyond a breast cancer diagnosis.

Many women find that recovery after breast surgeries is more difficult than expected and wish they had known more ahead of time about the recovery process (Rolnick et al., 2007). Women have reported that their surgeons provided useful preoperative information, but postoperatively, they were not told as much as they needed to know and felt unprepared for their incapacity after surgery (Rolnick et al., 2007; Spector, Mayer, Knafl, & Pusic, 2010). There is a growing body of literature addressing the motivational considerations (e.g., psychological factors) for breast reconstruction and satisfaction with aesthetic outcomes, but there is limited research addressing the recovery process. Therefore, the aim of this study is to provide an understanding about the recovery experiences of women following breast reconstructive surgery for breast cancer.

MATERIALS AND METHOD

This qualitative report is a secondary data analysis of an Institutional Review Board–approved study of interviews with women to explore their views of the recovery process following breast surgery (Klassen, Pusic, Scott, Klok, & Cano, 2009). In the parent study, face-to-face interviews were conducted with 48 women recruited from four plastic surgeons in Western Canada to inform the development of a new quality of life instrument, the Breast-Q, a measure of women’s satisfaction with the process and outcomes of breast reconstruction surgery (www.breast-q.org) (Pusic et al., 2009). Introductory letters and consent forms were mailed to 120 women who had undergone three types of breast surgery (i.e., reconstruction, reduction, and augmentation) with a 51.7% return rate of signed consents. The introductory letter provided information on the nature of the study, which would allow women to describe their “story” about the impact their breast condition and surgery had on their lives. Interviews were conducted using a semistructured interview guide and were tape-recorded and then transcribed verbatim from a professional transcription service. Of the 48 women interviewed, 12 had undergone breast augmentation, 15 had breast reductions, and 21 had reconstruction following breast cancer surgery.

This qualitative analysis focuses on the 21 women who had either immediate or delayed reconstruction following unilateral or bilateral mastectomy for breast cancer. Some of these women had either adjuvant chemotherapy and/or radiation therapy as well. Reconstruction for these women involved either an implant (i.e., saline or silicone) or TRAM flap. Three women choose to have contralateral prophylactic mastectomies and had bilateral implants either at the time of the original surgery, in two cases, and the other woman had reconstruction with implants a couple of years after her mastectomies. Another woman chose to have prophylactic bilateral mastectomies and reconstruction a year following breast-conserving surgery. Several women made the decision to have cosmetic surgery on the unaffected breast, with three choosing a reduction, two deciding to have a “lift” and one had augmentation on the healthy breast all in attempts to improve symmetry with the reconstructed breast. A couple of women had a TRAM flap and an implant due to breast cancer recurrences. Women’s ages ranged from 20 to 65 years (mean 52.9 years), 85% were White, and approximately one half of the women were married. All had their surgery a few years prior to their interview; all women were living in Canada and had Canadian health insurance.

Although the interviews were not designed specifically to explore the recovery process among women following breast reconstruction surgeries, several questions explicitly addressed topics germane to this report (e.g., How long did it take for you to get back to normal? Has it changed your body image? Have your feelings about your femininity changed? and How has the reconstruction affected your psychological or emotional well-being?). Through qualitative thematic analysis (Braun & Clark, 2006) we identified several predominant themes in relation to the recovery process.

Thematic analysis involves the identification, analysis, and reporting of themes in the data set that are important to the overall aim of the research (Braun & Clark, 2006). The phases of thematic analysis followed were (1) becoming familiar with the data through the reading and rereading of transcripts by two independent researchers, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes, and (6) extracting compelling examples related to themes from participants’ quotes. An expert qualitative researcher experienced with thematic analysis validated the overall analysis.

RESULTS

Three predominant themes were identified in relation to the recovery process for women who had tissue expanders with implants and those who had TRAM flap procedures. These three themes were (1) returning to normal (physically), (2) my breast/my body, and (3) emotional adjustment. Common patterns emerged within each theme, which are presented in Table 1.

TABLE 1.

Summary of Patterns Among Participants Within Each Theme

Returning to Normal	My Breast/My Body	Emotional Adjustment
Patterns among participants: • TRAM flap procedures resulted in more pain than tissue expanders and implants, delaying the recovery process. • The intermittent “sharp, shooting pains” and numbness were prolonged, but improved over time for most women. • Women with TRAM flap reconstruction had longer recoveries than those with implant reconstruction (e.g., months vs. weeks).	Patterns among participants: • Most women gained confidence and/or self-esteem after surgery. • There was a general sense of feeling more attractive and feminine. • Women felt a sense of wholeness again. • Reconstructed breasts felt like a normal part of most women’s bodies.	Patterns among participants: • Reconstruction provided women with a sense of control, whereas there was a lack of control with the cancer. • A feeling of closure to the cancer experience was achieved. • Increased confidence led to enhanced emotional recovery.

TRAM = Transverse Rectus Abdominis Muscle.

Returning to Normal (Physically)

This theme was related to women’s return to their usual activities and included physical and functional recovery. Women talked about two different phases: recovering from surgery physically (usually lasting a few weeks to months) and “getting back to normal” with usual activities (usually lasting months to a year or more). The phase of “getting back to normal” typically followed physical recovery by at least a few weeks. One woman noted that shortly after her surgery, she wondered if things were ever going to be normal again and described this as a “hard time,” though gradually things improved.

The most common physical problems that women experienced during the initial phase of recovery from surgery were fatigue, numbness, tightness, swelling, and pain. The sensation of tightness was often in the abdomen for those women who had TRAM flap procedures, and many women also felt arm tightness on the affected side. Pain was experienced by most women along the chest, back, and abdomen (if a TRAM flap was performed). Some women felt the procedure was “uncomfortable, but not painful.” However, a few women experienced significant pain and found it very difficult to get around the first few days after surgery. This was most notable among women who had TRAM flap procedures done. For one woman, the experience of a TRAM flap reconstruction following her first breast cancer diagnosis was described as “an extremely painful ordeal” and resulted in a prolonged recovery time. In contrast, she had an implant procedure several years later as a result of a second breast cancer, which she described as much easier and a lot less painful. A comment from another woman following a TRAM flap procedure is as follows: “I don’t think they (referring to the nurses) understand just how painful it was to walk” (Had immediate TRAM flap following mastectomy and a “lift” on the healthy breast).

Most women had some numbness either over the reconstructed breast, in the arm on the affected side, and/or along the abdomen if a TRAM flap was performed. One woman described that during the course of 2 weeks after surgery, she felt like her body was “freaking out” as she experienced many “bizarre sensations,” which she did not expect. Comments were made about intermittent “sharp, shooting pains” in the breast that improved over time for some, but several women described that they still experience occasional “sharp” or “shooting” pains in their breasts months to years later. “I still get little shooting pains in this muscle and it just feels tired . . . several days a week, several evenings a week, cause my arm is tired” (Approximately 8 months after bilateral implants).

Among women who had implants, there were comments about the discomfort of the expansion process. Many women did not realize how long and uncomfortable the expansion process was going to be. Among women who had a TRAM flap, there was also discussion about abdominal numbness and tightness, which made it difficult to stand up straight or change positions for 2 to 3 weeks postsurgery in most cases, but much longer for some.

Recovery and “getting back to normal” was described as an “ongoing process” that continued for months to a year or beyond for some. One woman described the recovery process as follows:

It was months before I felt, you know, anywhere near normal and even then, you know, it still took a while for my body, for my skin to stretch too, because I was hunched over for a while. Not that it was like, it wasn’t like unbelievably tight, but it was tight. My skin was really tight along my chest and along my abdomen. It felt so weird. (Delayed TRAM flap for one breast and a silicone implant for the other breast)

Time for full recovery was extended for those women who choose to have nipple reconstruction and/or areola tattooing following their initial breast reconstruction, which delayed healing by several months. There were numerous aspects of physical recovery, such as the experience of unusual sensations, in the reconstructed breast and/or abdomen that women were not prepared for. Although a few women felt well prepared, most felt it was a long recovery process (“I don’t think I really knew what to expect”). As one woman said, “I was told I wouldn’t feel normal for a year but I was still not totally prepared.”

Several women had their recovery complicated by reconstruction failure, capsular contraction, or infection that extended the recovery process by several months or longer for some. A few women had reconstruction failure from capsular contraction and required additional surgery for removal of the old implants and insertion of new implants. One woman had implant failure that was felt to be the result of tissue damage from her radiation. After her breast cancer diagnosis she had a lumpectomy, chemotherapy, and radiation but later decided to have bilateral prophylactic mastectomies with immediate tissue expanders and implants. The tissue expansion process took a year in her case because the pain was “unbelievable” as she described it.

It was like 24-hour pain with the reconstruction. It almost felt as if muscles and tissue were being ripped inside. . . . I was taking Dilaudid for four days to just handle it, until I could get back on my feet. (Describing the expansion process)

After a year of painful monthly expansions the decision was made to remove the implants, which was “devastating” physically and psychologically. It then took her another year to feel back to “100%” and to begin thinking about the possibility of another reconstruction procedure. A few women required additional procedures to remove “dog ears” or extra skin folds that developed as a result of their surgeries, but these procedures were felt to be minor.

My Breast/My Body

This theme reflected how the reconstructed breast looked and felt as well as how the women integrated their new breast into their self-concept and self-image.

It’s given me a little more confidence about my body and I don’t see the operation in the same way every time I look in the mirror, not that I look at myself a lot naked, but you know you get out of the shower, there’s something there now and so that’s nice, a lot nicer than looking at just a caved in area and a big scar. (Had implant 2 years after mastectomy)

Overall, most women liked the way their new breast(s) looked and felt. Many women described their breasts as looking and feeling “natural” and described the reconstruction as helping them to feel “whole” again:

I feel so normal that I forget all about the fact that one is not my original tissue. I feel as if I’ve still got my femininity and it feels whole and I’m not looking at other women and thinking of you are so lucky. I just feel normal the way I used to. It doesn’t feel artificial. (TRAM flap with nipple creation)

It did make me feel better when I did look in the mirror, to see myself almost normal. . . . The TRAM flap side is probably a little softer than the implant side, but it’s negligible. (Had TRAM flap followed by an implant several years later after a second breast cancer diagnosis)

Women discussed the fact that they could wear whatever clothing they wished to after the surgery, especially “tighter clothes,” and many felt more comfortable wearing a bathing suit. Most comments about the reconstructed breast were positive, even though the cosmetic outcome and symmetry were less than perfect in many cases. The reconstructed breast was integrated into women’s body image to varying degrees over time, from “it is part of my body” and “I don’t even think about it” to “the breasts are different but I am getting used to them.”

The few women with complications had more negative comments about being self-conscious and feeling a loss of femininity, as one woman stated, “I don’t feel as great about myself as I did.” One woman had difficulty integrating her reconstructed breasts into her body, which she indicated through her comment: “It feels like a dead man’s hand . . . I know I’m touching it but I cannot really feel it. It feels awful, it feels ugly.” Considering there were so few negative remarks about how women felt about their bodies following reconstruction it appears that the majority of women integrated and considered their “new” breasts as a natural part of their body.

Emotional Adjustment

Immediate reconstruction following mastectomy helped women cope with the idea of losing a breast and allowed them to feel a sense of normalcy upon awakening from anesthesia postsurgery.

I knew I was having the reconstruction and thought I would have cuts and scars all over, but all I could see was like what looked normal to me when I got done. So that was just so helpful to me in coming out of the surgery that I hadn’t lost something. . . . You know it made a huge difference with the cancer altogether because then it became focused on not the cancer so much. (Had TRAM flap with nipple creation)

Breast reconstruction led to a profoundly positive emotional recovery for most women, whether they had immediate or delayed reconstruction, in that they described it as providing “closure” to their cancer experience and as providing them with some personal “control” over their situation: “It was closure for me. I just felt that I could just move on and I really don’t think about it. . . . Once I had the reconstruction I just don’t think about it anymore” (had delayed TRAM flap with nipple reconstruction).

It’s not just reconstructing the breasts, it’s giving a good part of your life back. . . . I felt like I was in control and I was going to make this decision and it wasn’t a diagnosis of cancer. I didn’t have any control in that (referring to her breast cancer diagnosis), but this I had control over and I made the decision. . . . There is a lot of bad stuff but there is a lot of good stuff too and I will categorize this reconstruction as the good stuff that followed all of it. (Had delayed reconstruction with TRAM flap)

Women were able to think less about their breast cancer experiences and had fewer worries about breast cancer recurrence. They felt healthier physically and psychologically and were able to move on with their lives with a positive outlook.

I had my 4-year check-up this week, and everything is fine. I would say to you that 98–99% of the time I don’t think about it (referring to breast cancer). . . . I think that you want to live your life. You aren’t supposed to just pass through it, and I think having this done enables me to just go out there and live a bit more. (Delayed tissues expanders with implants)

I think that the healthier you look and feel superficially, whether that be with your clothes on or off, you begin to take it in internally. Then you begin to believe that with your heart and soul. (Had TRAM flap following mastectomy for breast cancer recurrence)

Although the diagnosis of breast cancer was psychologically difficult and described as “devastating” in some instances, the reconstruction was described as a “wonderful gift” and became an integral part of emotional recovery. Women not only regained a sense of “confidence” and felt more “positive” emotionally, they were able to integrate their “new” breasts into their bodies and move beyond their cancer experiences. Some of these feelings were more apparent for women who had delayed reconstruction because they had experienced the reminder of cancer when they looked in the mirror and saw only scars and no breast/s or when they had to wear their prostheses, which didn’t feel normal. Some women expressed that they valued things more in their lives and that they had grown through the whole experience. The confidence that they gained led to increased awareness about the psychological benefits of reconstruction following breast cancer, which resulted in sharing of this information with various breast cancer groups for one of the women.

DISCUSSION

The goal for this qualitative report was to describe the physical and emotional recovery of women following breast reconstruction after mastectomy for breast cancer. Regardless of the type of breast reconstruction (i.e., tissue expander with implant or TRAM flap) or whether it was immediate or delayed, the reconstruction had a tremendous physical and psychological impact on a woman in terms of how she physically recovered, how she felt about herself and her body, and how she adjusted emotionally to the whole experience of breast cancer.

Physical recovery appeared to have two phases, the first of which was shorter in duration and involved the process of overcoming the acute postsurgical pain and regaining functional ability to walk and move about normally. The second phase was marked by a longer period of physical recovery and was more often experienced by women who had TRAM flap procedures, which requires more complicated surgery that involves manipulation of abdominal tissues, as well as chest tissues. Physical recovery eventually led to a return to normal activities but in many cases took several months. The majority of women were able to perceive their new breast/s as a part of their body, even in instances where women expressed that the reconstructed breast did not feel natural to the touch. As a result, their self-confidence and body image improved, which was especially prominent among women who had delayed reconstruction and had the experience of living without one or both breasts for a period of time before their reconstruction. Emotionally, women adjusted quite well and in fact felt as though the reconstruction played a significant role in helping them cope with the overall experiences of being a breast cancer survivor.

As previously mentioned, most of the past research with women who have undergone breast reconstruction surgery following mastectomy has focused on women’s motivations for breast reconstruction and on their perceptions of aesthetic outcomes. More recent research has focused on women’s expectations of breast reconstruction following mastectomy and on decision making about breast reconstruction. Lee and colleagues (2011) surveyed early-stage breast cancer survivors about their knowledge of specific reconstruction facts (e.g., Which breast reconstruction surgery is easier on the body, that is, heals faster?), personal concerns and goals, as well as about their involvement in decision making. Findings revealed the majority of women had a lack of knowledge about reconstruction even though 61% of them had breast reconstruction performed before the survey. Although participants expressed a high degree of concern about reconstruction complications, less than 5% correctly identified the average rate of complications. With regard to involvement in decision making, most women felt they had the right degree of involvement, although only 23% indicated that their providers discussed the cons of reconstruction. Women undergoing implant breast reconstruction following mastectomy were found to have inaccurate expectations regarding the appearance and sensation of the breast following surgery, which often led to dissatisfaction with the outcome (Snell et al., 2010). Several women from the study we are reporting on also described that they were unprepared for the physical appearance and “unusual” sensations, in some cases the lack of sensation, following their breast reconstruction surgery. These findings indicate that greater emphasis on educating women pre- and postoperatively about the range of potential physical outcomes, including the various types of complications that may occur, is needed.

A few reports have addressed the recovery experiences of women following breast reconstruction for cancer. Rowland et al. (2000) conducted a quantitative study among breast cancer survivors (1–5 years after diagnosis) and compared women who had a lumpectomy, mastectomy alone, and those who had mastectomy with reconstruction on several general standardized quality-of-life measures. No statistical differences were found among the three groups with respect to physical, social, or emotional functioning and well-being or with concern about cancer recurrence. This study incorporated the use of generic quality-of-life measures available at the time and since then several breast cancer–specific quality-of-life measures have been developed, some of which address issues pertinent to surgical procedures as well (e.g., BREAST-Q). It is therefore possible that quality of life results would be different using these more focused measures.

Two qualitative reports explored the experiences of women with breast cancer who had breast reconstruction surgeries, one of which described the experiences of 10 women who underwent TRAM flap breast reconstruction and the other included 35 women who were about to have or who underwent either TRAM flap, Latissimus Dorsi flap, or tissue expander with implants, with the majority having the later procedure (Denford, Harcourt, Rubin, & Pusic, 2010; Hill & White, 2008). Findings from the study conducted with women who had TRAM flap procedures revealed the significant emotional impact that losing a breast has on a woman and the struggles women encounter as they adjust to a new body image. The study by Denford and colleagues (2010) focused on the exploration of the concept of normality. The four main themes of normalcy that emerged related to appearance, behavior, feelings, and health. The third theme relating to feelings was titled reconstructing normal and most closely paralleled some of the experiences that the women in our study described in that the reconstruction helped them to feel ‘whole’ again. Their final theme health was similar to a pattern we identified within the theme emotional adjustment in that women felt the reconstruction helped them to forget about the breast cancer. Our results are consistent with those found in these qualitative reports but extend beyond the focus on emotional adjustment and the concept of normality by incorporating women’s experiences of physical and psychological recovery.

A limitation of this study was that interviews were conducted, in some cases, years after the women had their reconstructive breast surgery, and recall of the events may not have fully captured the recovery experiences. Additionally, the goal of the original research was to qualitatively explore women’s expectations of breast reconstructive surgeries; however specific questions were asked about issues directly related to the recovery process allowing the researchers to extract data from the personal interviews relevant to the goals of this qualitative report. Further research utilizing a mixed-method approach and prospective design would be useful to provide a more comprehensive understanding of the physical and psychological recovery of women following mastectomy with breast reconstruction for breast cancer.

CONCLUSIONS

Clinical implications for health care providers relate to the need for more thorough discussions prior to surgery about differences in duration and type of physical recovery to be expected from the various breast reconstruction procedures. Discussions specific to the type of procedure should continue at each postsurgical visit as reminders to women about what they might expect during the physical recovery phase. With regard to emotional recovery, women may benefit from opportunities to speak with other women, who had the same type of reconstruction, about their personal recovery experiences. In cases where women may be reluctant to speak with other women who have undergone breast reconstruction, examples of how women described their emotional recovery can be incorporated into the pre- and postsurgical visits. This type of presurgical information and counseling may help some women with their breast reconstruction decision making and postsurgically it may validate their own feelings, which may facilitate the emotional recovery process.