What does a breast feel like? A qualitative study among healthy women

What does a breast feel like? A qualitative study among healthy women Background: Restoring the body as normal as possible increases quality of life. Aesthetically, almost perfect breast reconstructions can be created. However, these reconstructed breasts have almost no sensation. Our hypothesis is that if we succeed in restoring sensation, this will increase quality of life. So far, little is written about the phenomenon of breast sensation, which makes it difficult to evaluate whether the quality of life increases after restored sensation. Therefore, the primary goal of this study is to determine what the importance and meaning is of breast sensation among healthy women. Methods: A qualitative, descriptive phenomenological study was performed in an academic hospital between October 2016 and March 2017. A total of 10 semi-structured in-depth interviews were conducted in healthy women who did not undergo prior breast surgery. The sample size was based upon ‘saturation’. The interviews were tape-recorded, transcribed verbatim, coded and analysed according to phenomenology keeping in mind the research question ‘what is the importance and meaning of sensation of the breast?’ Results: Seven interrelated themes on how sensation of the breast is experienced were found: the absent breast (1), the present breast (2), the well-functioning breast (2a), the feminine breast (2b), the sensual breast (2c), the alien breast (2d), the safe breast (2d). Conclusions: The seven interrelated themes can form the basis to develop a quantitative research tool to evaluate quality of life after innervated breast reconstruction and can be implemented in counselling before breast reconstructive surgery in the form of shared treatment decisions. Keywords: Breast, Sensation, Breast reconstruction, Qualitative study Background are on their way to provide level A evidence on the Quality of life after breast cancer treatment should be an effect of nerve coaptation therefore it is not yet important goal during treatment because breast cancer standard treatment. incidence and survival rate keeps growing due to chan- Another reason why this technique is not yet widely ging lifestyle, early detection and advances in therapy spread might be that the (importance of) breast sensa- [1]. Previous studies suggest that restoring the body as tion is undervalued in literature. Some studies quantified normal as possible after mastectomy, increases the qual- the loss of sensation, measured by pressure on the skin, ity of life [2–4]. Although excellent cosmetic results can in women who underwent a breast operation [11–13]. be achieved with autologous breast reconstruction, most However, breast sensation is far more complex than only reconstructed breasts fail to regain sensation [5]. Tech- pressure sensitivity, since the question ‘does your breast nically, surgeons are able to perform a sensible nerve co- feel like your own’ seems to be one of the most import- aptation [6–10]. Currently, multiple randomized studies ant determinants of patient satisfaction after breast re- construction [14]. Our hypothesis is that (the qualitative aspect of) breast * Correspondence: anouk.cornelissen@mumc.nl sensation is important to women and if we can restore Department of Plastic Surgery, Maastricht University Medical Center, P. sensation of the reconstructed breast, quality of life of Debyelaan 25, 6229 HX Maastricht, The Netherlands Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Cornelissen et al. BMC Women's Health (2018) 18:82 Page 2 of 7 breast cancer survivors will improve further. This hy- The sample size was calculated by ‘saturation’, so the pothesis could assume that techniques to improve sensa- appropriate sample size was met if interviews did not tion of the autologous reconstructed breast, should be supply new themes [19]. encouraged [8]. However, to properly restore the sensa- tion of the (reconstructed) breast we should, first, under- Semi-structured interviews stand the phenomenon of breast sensation. The in-depth interviews were semi-structured. A topic Therefore, the primary goal of this study is to explore the list was developed based upon brainstorming among the importance and meaning of sensation of the breast. The re- authors. (Table 2) This topic list was considered a dy- sults can be used in a follow-up study in operated women, namic instrument and changed over time based on new to finally develop an evaluation tool (questionnaire) to insights which developed as more interviews were per- evaluate the qualitative aspect of breast sensation. formed. Participants were encouraged, by questions like ‘What do you mean?’, ‘Could you give an example?’,to Methods speak freely about their breasts. Interviews were held at Study design the participants house or a location of choice e.g. a café. In the Maastricht University Medical centre a qualitative The interviews were tape-recorded, on average the inter- study, based on in-depth interviews was performed be- views lasted 30 min. tween October 2016 and March 2017. A phenomeno- logical analysing method was used to address the Analysis research question ‘What is the importance and meaning The interviews were transcribed verbatim after which of sensation of the breast?’. Phenomenology focusses on transcripts were anonymized for further analysis. Tran- a person’s perception of an ‘event’ and tries to under- scripts were first coded by hand, starting with descriptive stand people’s perspective and understanding of a certain open codes, like reaction of the nipple, progressing to ‘phenomenon’ [15]. clustering of these codes into axial codes, like sexuality This study was approved by the local ethical commit- and eventually themes [20]. Developing of these codes/ tee (project 164,228). Written informed consent was re- themes was supported by the question ‘how do women trieved from all participants. experience sensation of the breast and what does it mean to them?’ Participants We chose not to perform member checking. Since, In total 10 interviews with healthy women who did not this does not increase validity and might even pose a undergo prior breast surgery were performed. One inter- threat to validity if participants want to correct their an- view was a duo interview with a couple. We used pur- swers. Furthermore, our goal is not internal validity but posive sampling to interview highly educated women, to rather comprehensiveness of the phenomenon breast answer this research question subjects needed to be able sensation [21]. To minimize the effect of subjectivity to express themselves well. Previous research shows that during analysis ‘Multiple Coding’ was performed in the age, body mass index (BMI) and breast size are inversely form of supervised sessions during research meetings correlated to breast sensation [16, 17]. Therefore, we with the first and last author. Segments of the data with created heterogeneity for these factors. Characteristics of content of disagreement were coded multiple times and our participants can be found in Table 1. Participants discussed to create further insight to refine our coding were recruited through snowball sampling [18]. system [22]. Table 1 Participants characteristics # Age Ethnic identity (self-declared) Sexuality Children Breastfeeding Cup size BMI Education 1 25 Asian/Caucasian Hetero 1 Yes C 18 University 2 56 Caucasian Hetero 1 Yes B 22 University 3 74 Caucasian Hetero 3 Yes E 31 University 4 21 African Hetero 0 No A 30 Elementary 5 43 Caucasian Hetero 2 Yes B 25 University 6 20 Caucasian Lesbian 0 No A 23 University 7 21 Caucasian Lesbian 0 No A 20 University 8 22 Caucasian Hetero 0 No D 22 University 9 27 Caucasian Hetero 0 No D 21 University 10 25 Caucasian Hetero 0 No B 21 University Cornelissen et al. BMC Women's Health (2018) 18:82 Page 3 of 7 Table 2 Topic list of themes of semi-structured in-depth interview healthy breast with normal sensation would be ‘enough’ but if both breasts had no sensation they would be more General information Full name, age, BMI, cup size, children, breastfeeding, self-declared ethnic identity, eager to opt for a sensate reconstruction. sexuality and education. Sensation of the breast Breast self-exam, reaction of the nipple, pain, The present breast (2) breastfeeding, development in life (child, The present breast could be present in many different puberty, adulthood and motherhood), erogenous zone ways to women. Therefore, the theme present breast was further subdivided into five themes; the well-functioning Menstrual cycle Pain, difference in feeling, nipple breast (2a), the feminine breast (2b), the sensual breast Hypothetical No sensation in the breast, importance of (2c), the alien breast (2d) and the safe breast (2e). sensation in reconstructed breast, situations in which sensation in the breast would be Instances of explicit breast sensation were mostly missed caused by ‘negative’ sensations like pain/unpleasant sen- sation. E.g. breasts become more sensitive/painful during The entire analysis was based upon a phenomenological menstruation, an unpleasant sensation while playing approach, according to which we can explore how differ- sports especially in women with larger breast, nipple ent meanings can be attributed to one’sbody. Ouranalysis reaction due to cold temperature etc. Women were also focuses on different meanings of the breast, i.e. the differ- aware of their breast sensation during breast self-exam- ent ways in which the breast “appears” to a person. ination. However, respondents did not experience this in a negative nor positive way. One respondent described it Results as a business act, something that had to be done without Through the analysis of our data, we identified seven any other associations. interrelated themes, which are derived from Leder’s dis- Respondents claimed to have higher sensitivity and tinction between absent and present body. (Table 3) awareness in an intimate setting. This is discussed under These themes represent different ways in which sensa- the theme ‘the sensual breast’. One respondent even ex- tion of the breast is related to different meanings of the plained that when she wears a push-up bra with a deep breast in healthy women. cleavage top, whenever she goes out, she feels as if her breasts are ‘more present’, and she is more aware of her The absent breast (1) breast sensation. Most respondents were not aware of (sensation in) their breast during their daily life. The fact that their breasts The well-functioning breast (2a) were ‘absent’ was mentioned as a positive aspect. At the If asked about breast sensation, all respondents who beginning, it was difficult to interview healthy women gave breastfeeding would spontaneously mention this. about their breast sensation which was not actively The sensation was described as a total different and new sensed. Moreover, our respondents said that sensation sensation of the breast (e.g. lactation, breast engorge- of the breast is an unfamiliar topic in conversations ment etc.). Although, for some breastfeeding was associ- among friends. ated with unpleasant sensations of the breast e.g. nipple During the interviews, hypothetical questions were pain, fissures, painful breast engorgement, etc., they re- asked like: ‘if you had no sensation in your breast, would membered it as a valuable experience and seemed to you miss it?’. Paradoxically, all women would answer have forgotten the pain that came with it. Some women yes. Respondents who would choose for reconstructive mentioned that being able to give breastfeeding would breast surgery, if they ever needed to undergo a mastec- be an important factor if they had the choice about the tomy, would choose for a reconstruction with sensation, timing of the prophylactic mastectomy, they would wait if given the option. Respondents saw it as an extra until after their family was complete. advantage and mentioned it would be strange if Some women described the breast to be more sensitive somebody touched their breasts and they would not be in certain periods of the menstrual cycle, this was de- able to register this, as normally this is an intimate place scribed as unpleasant but not necessarily painful. How- to be touched. Although, they found it very difficult to ever, they preferred not to be touched on their breasts give specific examples of situations in which the lack of during this period. sensation would bother them. Mostly, the sensual The breast and especially the nipple-areola complex sensation was mentioned to be missed, but also a feeling have another function, the nipple is considered an of security. erogenous area. However, our respondents explained Some respondents answered that it would make an that touching of the nipples did not cause significant important difference whether only one or both breasts arousal and was not considered as an important erotic would have no sensation. They indicated that having one body part during sexual interaction. Cornelissen et al. BMC Women's Health (2018) 18:82 Page 4 of 7 Table 3 Illustrating quotes of the seven identified themes of the phenomenon ‘breast sensation’ in healthy women with the respondents number Theme Quote 1 The absent breast 7 The thing is, off course I am not aware of my breasts, not even now. 10 If you are asking me about these topics I am thinking ‘Oh yes I am aware of my breasts’. But in the moment, not so much, they are just always there … So, they have become part of my body and how my body works and reacts in certain environments. 5 The fact that you are not aware (of your breast) is pleasant and will interfere with the way I describe sensation. Because they are just part of my body and I am not aware of them. It would be a pity (if I did not have sensation). But it is not something I would worry about. However, I am not sure. And off course it matters if sensation would be gone in one or both sides … I don’t think it would be such a big thing if I would still have sensation on one side. 2 The present breast 10 If I menstruate, I feel them a little bit more, it is an unpleasant sensation. If you don’t have your period you feel freer and don’t have to think about anything. 9 I don’t find performing self-breast-exam annoying. I just feel neutral about it I just do it quickly, once a month Sometimes I feel pain, right before I have to menstruate, that is a very painful sensation in the breast. 2a The well-functioning breast 2 That that body can carry a child, can bear a child and can feed a child. I find that very pleasant. ‘Oh that is what these breasts are also for’. 2b The feminine breast 6 I would miss it (sensation in the breasts), but I don’t think… I would not feel less feminine… I think the aesthetic appearance of the breast are more important to feel feminine than sensation. 2c The sensual breast 3 Well, my partner thought it was amazing (breasts in an intimate setting). I thought, well if this is part of intimacy, well ok then. But me myself I did not find it special. 2d The alien breast 2 Sometimes I have to hold them while playing sports, and then it becomes almost a thing like during a mammography, a separate thing… That breast is pressed completely flat in between two plates and off course that is a very strange experience. A thing hanging from your body, I don’t like it at all… As if the breast is being taken away from you. I like to think of the breast as something round… That might nog be very realistic, if you see what kind of breasts there are. But the form changes (makes flat gestures with her hands) and that seems strange to me. 2e The safe breast 10 It might be scary (to have a breast without sensation) because I would think that if a body part is been operated you would be extra focussed on this body part and that you would want to know how it is doing. And if you don’t feel anything anymore, you would lose control… But I also think it (sensation of the breast) is important to regain trust in your body… For example, this might be a strange comparison, but I have injured my ankle once and during revalidation sensation was very important to see if I could move it and if it was going well with my ankle. 7 It is not a pleasant sensation (sensitive breast during menstruation), but it is more like I know that my body is working right... You can trust a little bit on your body, I know by the sensation of my own breasts ok I will have my menstruation with a few days… It is a confirmation that everything is well, you know. And that is pleasant although the sensation is a bit painful. 5 Because you know, for me the main reason to undergo a preventive mastectomy would be to get some security. And I think that if you cannot feel a piece, I think that, that would give me a very insecure feeling. There is a piece on my body, but I can’t feel it. For me that would be very unpleasant. The feminine breast (2b) intimate setting was experienced as pleasant by our re- Most respondents thought that having sensation or not spondents. However, most respondents do not think, in their breasts, would not influence their femininity. they would miss the contributing factor of the nipple to Whereas having breasts or not was thought to influence arousal. Most women had the idea that their male part- their femininity. Almost all respondents named restoring ner enjoyed touching the nipple more than they did. the appearance of a natural looking breast as the main Most respondents did enjoy seeing their partner being reason to choose for a breast reconstruction. One re- aroused by their nipple. spondent thought she would be able to feel feminine wearing clothes and external prosthesis, however she The alien breast (2d) would not feel feminine in a bathing suit or naked after Some respondents explain that when the breast loses the a mastectomy. normal round shape, they feel as if it is no longer a breast, but rather a ‘thing’ hanging from their body. The sensual breast (2c) Mammography was the most named source of this feel- The nipple is considered an erogenous area and be- ing. But also during sports women experienced their comes erectile during arousal. Being touched there in an breast as not feeling like a breast. Cornelissen et al. BMC Women's Health (2018) 18:82 Page 5 of 7 The safe breast (2e) insecurity because of an absent breast, which paradoxically One respondent found it paradoxical that if she would is more ‘present’ because it becomes ‘impaired’ after sur- choose for a risk-reducing bilateral mastectomy and her gery. To these women the information about sensation reconstructed breasts would have no sensation, she after the operation, might be even more contributing to would not feel safer at all. However, this was the goal to the decision to undergo a prophylactic mastectomy. undergo this operation to begin with. Another respond- As was stated by one of our responders she would not ent compared it to having an injured ankle, to her it feel safer at all after a breast reconstruction without sen- would be strange to have no sensation in an impaired sation. On the contrary, she would feel less safe if she body part, because normally sensation increases in an would not have sensation in an ‘impaired’ breast. In impaired body part and warns the body whenever there women with a higher oncological risk, sensation might is a problem. be even more important. However, further qualitative re- Some respondents, described hypersensitivity of their search in genetically predisposed women is necessary. breast during certain periods in their menstrual cycle Interestingly, the erogenous sensation does not seem and experienced it as a confirmation that their body was to play a major role in breast sensation according to our still functioning ‘normal’, although they experienced this results. Our respondents indicated that mainly their sensation as unpleasant. For one respondent, this was partner enjoyed their breasts during an intimate setting, the reason to change from an intrauterine hormonal de- however for this function erogenous sensation is not ne- vice to oral contraceptives, in order to be able to have a cessary. This might be clinically relevant, because tech- menstrual cycle again. nically we are able to perform a microsurgical nerve coaptation and restore breast sensation, light touch [6]. Discussion However, restoration of erogenous sensation is rather an Not much literature is written about sensation of the exception [10]. Previously, it was thought that nerve co- breast, the literature that is written focuses on ‘negative’ aptation was not worthwhile if erogenous sensation could sensation (pain) [23–28]. This is to be expected accord- not be restored, this might be correlated to the number of ing to the theory of Leder [29], generally, there is no female plastic surgeons, this used to be only 0.2% in 1959, awareness of healthy body parts, once body parts are im- now the number of female plastic surgical trainees is 37% paired, one suddenly becomes aware of those body parts. [31], which might explain the renewed interest. This study shows that breasts mostly live an unnoted Another interesting fact, which might have clinical life, which is considered a positive thing. However, in relevance is that some respondents indicate that having our clinic after a breast reconstruction, patients will one breast with normal sensation would be sufficient. complain about their breasts not feeling like their own Currently, in unilateral breast reconstruction often the and paradoxically the breast(s) become(s) ‘more present’ contralateral, healthy, breast is operated on to sym- although no breast sensation is present. metrize the result. According to our results it might be Our respondents stated that sensation was not needed important to discuss the implications for breast sensa- to feel feminine, however a beautiful natural looking tion of having a correction on the ‘healthy breast’,in breast is, for our respondents this would be the main order to adapt the surgical plan according to your reason to choose for a reconstruction. This is note- patient’s wishes. worthy, since in reconstruction restoring function is nor- This study was meant to find out what qualitative as- mally the main goal. E.g. after leg amputation function pects of breast sensation are important and to lay the can be restored by using running blades, which do not basis to develop a proper evaluation tool. Up until now, resemble a normal leg at all nor are aesthetically pleas- we can only rely on quantitative sensation measure- ing [30]. ments and existing questionnaires like the general ques- Remarkably, our respondents described a link between tionnaires (SF-36, EORTC, Body image scale) and the appearance and sensation; if a breast loses the round disease specific questionnaire (BREAST-Q). However, shape e.g. during a mammography, the breast is also none of these focus on (positive) sensation of the breast sensed differently, like a ‘thing’. If the breasts are more after breast cancer treatment. Developing a new tool present e.g. in a push-up bra, the breasts are sensed specified on positive breast sensation, might improve the more actively. This emphasizes the importance of a nat- way of evaluating the results of innervated breast recon- ural looking breast after reconstruction also for the re- struction and provide higher quality evidence, which is gain of sensation. needed to be able to implement this technique in The goal of mastectomy in prophylactic cases is differ- national guidelines. ent compared to surgery after a malignancy. These We are aware of the fact that this study was performed women do not want to go from an insecurity because of among healthy women and these results cannot be possible malignancy in the future to a daily-based extrapolated to women treated for breast cancer. This Cornelissen et al. BMC Women's Health (2018) 18:82 Page 6 of 7 study was merely meant to provide a frame of reference 3. Jagsi R, Li Y, Morrow M, Janz N, Alderman A, Graff J, Hamilton A, Katz S, Hawley S. Patient-reported quality of life and satisfaction with cosmetic about the phenomenon breast sensation in the form of outcomes after breast conservation and mastectomy with and without seven interrelated themes which will serve as a base for reconstruction: results of a survey of breast Cancer survivors. Ann Surg. a follow-up study in women who underwent breast sur- 2015;261(6):1198–206. 4. Perez-San-Gregorio MA, Fernandez-Jimenez E, Martin-Rodriguez A, gery and to eventually develop a questionnaire to evalu- Borda-Mas M, Rincon-Fernandez ME. Quality of life in women following ate the impact on quality of life of innervated breast various surgeries of body manipulation: organ transplantation, mastectomy, reconstructions. and breast reconstruction. J Clin Psychol Med Settings. 2013;20(3):373–82. 5. Shridharani SM, Magarakis M, Stapleton SM, Basdag B, Seal SM, Rosson GD. 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What does a breast feel like? A qualitative study among healthy women

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Abstract

Background: Restoring the body as normal as possible increases quality of life. Aesthetically, almost perfect breast reconstructions can be created. However, these reconstructed breasts have almost no sensation. Our hypothesis is that if we succeed in restoring sensation, this will increase quality of life. So far, little is written about the phenomenon of breast sensation, which makes it difficult to evaluate whether the quality of life increases after restored sensation. Therefore, the primary goal of this study is to determine what the importance and meaning is of breast sensation among healthy women. Methods: A qualitative, descriptive phenomenological study was performed in an academic hospital between October 2016 and March 2017. A total of 10 semi-structured in-depth interviews were conducted in healthy women who did not undergo prior breast surgery. The sample size was based upon ‘saturation’. The interviews were tape-recorded, transcribed verbatim, coded and analysed according to phenomenology keeping in mind the research question ‘what is the importance and meaning of sensation of the breast?’ Results: Seven interrelated themes on how sensation of the breast is experienced were found: the absent breast (1), the present breast (2), the well-functioning breast (2a), the feminine breast (2b), the sensual breast (2c), the alien breast (2d), the safe breast (2d). Conclusions: The seven interrelated themes can form the basis to develop a quantitative research tool to evaluate quality of life after innervated breast reconstruction and can be implemented in counselling before breast reconstructive surgery in the form of shared treatment decisions. Keywords: Breast, Sensation, Breast reconstruction, Qualitative study Background are on their way to provide level A evidence on the Quality of life after breast cancer treatment should be an effect of nerve coaptation therefore it is not yet important goal during treatment because breast cancer standard treatment. incidence and survival rate keeps growing due to chan- Another reason why this technique is not yet widely ging lifestyle, early detection and advances in therapy spread might be that the (importance of) breast sensa- [1]. Previous studies suggest that restoring the body as tion is undervalued in literature. Some studies quantified normal as possible after mastectomy, increases the qual- the loss of sensation, measured by pressure on the skin, ity of life [2–4]. Although excellent cosmetic results can in women who underwent a breast operation [11–13]. be achieved with autologous breast reconstruction, most However, breast sensation is far more complex than only reconstructed breasts fail to regain sensation [5]. Tech- pressure sensitivity, since the question ‘does your breast nically, surgeons are able to perform a sensible nerve co- feel like your own’ seems to be one of the most import- aptation [6–10]. Currently, multiple randomized studies ant determinants of patient satisfaction after breast re- construction [14]. Our hypothesis is that (the qualitative aspect of) breast * Correspondence: anouk.cornelissen@mumc.nl sensation is important to women and if we can restore Department of Plastic Surgery, Maastricht University Medical Center, P. sensation of the reconstructed breast, quality of life of Debyelaan 25, 6229 HX Maastricht, The Netherlands Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Cornelissen et al. BMC Women's Health (2018) 18:82 Page 2 of 7 breast cancer survivors will improve further. This hy- The sample size was calculated by ‘saturation’, so the pothesis could assume that techniques to improve sensa- appropriate sample size was met if interviews did not tion of the autologous reconstructed breast, should be supply new themes [19]. encouraged [8]. However, to properly restore the sensa- tion of the (reconstructed) breast we should, first, under- Semi-structured interviews stand the phenomenon of breast sensation. The in-depth interviews were semi-structured. A topic Therefore, the primary goal of this study is to explore the list was developed based upon brainstorming among the importance and meaning of sensation of the breast. The re- authors. (Table 2) This topic list was considered a dy- sults can be used in a follow-up study in operated women, namic instrument and changed over time based on new to finally develop an evaluation tool (questionnaire) to insights which developed as more interviews were per- evaluate the qualitative aspect of breast sensation. formed. Participants were encouraged, by questions like ‘What do you mean?’, ‘Could you give an example?’,to Methods speak freely about their breasts. Interviews were held at Study design the participants house or a location of choice e.g. a café. In the Maastricht University Medical centre a qualitative The interviews were tape-recorded, on average the inter- study, based on in-depth interviews was performed be- views lasted 30 min. tween October 2016 and March 2017. A phenomeno- logical analysing method was used to address the Analysis research question ‘What is the importance and meaning The interviews were transcribed verbatim after which of sensation of the breast?’. Phenomenology focusses on transcripts were anonymized for further analysis. Tran- a person’s perception of an ‘event’ and tries to under- scripts were first coded by hand, starting with descriptive stand people’s perspective and understanding of a certain open codes, like reaction of the nipple, progressing to ‘phenomenon’ [15]. clustering of these codes into axial codes, like sexuality This study was approved by the local ethical commit- and eventually themes [20]. Developing of these codes/ tee (project 164,228). Written informed consent was re- themes was supported by the question ‘how do women trieved from all participants. experience sensation of the breast and what does it mean to them?’ Participants We chose not to perform member checking. Since, In total 10 interviews with healthy women who did not this does not increase validity and might even pose a undergo prior breast surgery were performed. One inter- threat to validity if participants want to correct their an- view was a duo interview with a couple. We used pur- swers. Furthermore, our goal is not internal validity but posive sampling to interview highly educated women, to rather comprehensiveness of the phenomenon breast answer this research question subjects needed to be able sensation [21]. To minimize the effect of subjectivity to express themselves well. Previous research shows that during analysis ‘Multiple Coding’ was performed in the age, body mass index (BMI) and breast size are inversely form of supervised sessions during research meetings correlated to breast sensation [16, 17]. Therefore, we with the first and last author. Segments of the data with created heterogeneity for these factors. Characteristics of content of disagreement were coded multiple times and our participants can be found in Table 1. Participants discussed to create further insight to refine our coding were recruited through snowball sampling [18]. system [22]. Table 1 Participants characteristics # Age Ethnic identity (self-declared) Sexuality Children Breastfeeding Cup size BMI Education 1 25 Asian/Caucasian Hetero 1 Yes C 18 University 2 56 Caucasian Hetero 1 Yes B 22 University 3 74 Caucasian Hetero 3 Yes E 31 University 4 21 African Hetero 0 No A 30 Elementary 5 43 Caucasian Hetero 2 Yes B 25 University 6 20 Caucasian Lesbian 0 No A 23 University 7 21 Caucasian Lesbian 0 No A 20 University 8 22 Caucasian Hetero 0 No D 22 University 9 27 Caucasian Hetero 0 No D 21 University 10 25 Caucasian Hetero 0 No B 21 University Cornelissen et al. BMC Women's Health (2018) 18:82 Page 3 of 7 Table 2 Topic list of themes of semi-structured in-depth interview healthy breast with normal sensation would be ‘enough’ but if both breasts had no sensation they would be more General information Full name, age, BMI, cup size, children, breastfeeding, self-declared ethnic identity, eager to opt for a sensate reconstruction. sexuality and education. Sensation of the breast Breast self-exam, reaction of the nipple, pain, The present breast (2) breastfeeding, development in life (child, The present breast could be present in many different puberty, adulthood and motherhood), erogenous zone ways to women. Therefore, the theme present breast was further subdivided into five themes; the well-functioning Menstrual cycle Pain, difference in feeling, nipple breast (2a), the feminine breast (2b), the sensual breast Hypothetical No sensation in the breast, importance of (2c), the alien breast (2d) and the safe breast (2e). sensation in reconstructed breast, situations in which sensation in the breast would be Instances of explicit breast sensation were mostly missed caused by ‘negative’ sensations like pain/unpleasant sen- sation. E.g. breasts become more sensitive/painful during The entire analysis was based upon a phenomenological menstruation, an unpleasant sensation while playing approach, according to which we can explore how differ- sports especially in women with larger breast, nipple ent meanings can be attributed to one’sbody. Ouranalysis reaction due to cold temperature etc. Women were also focuses on different meanings of the breast, i.e. the differ- aware of their breast sensation during breast self-exam- ent ways in which the breast “appears” to a person. ination. However, respondents did not experience this in a negative nor positive way. One respondent described it Results as a business act, something that had to be done without Through the analysis of our data, we identified seven any other associations. interrelated themes, which are derived from Leder’s dis- Respondents claimed to have higher sensitivity and tinction between absent and present body. (Table 3) awareness in an intimate setting. This is discussed under These themes represent different ways in which sensa- the theme ‘the sensual breast’. One respondent even ex- tion of the breast is related to different meanings of the plained that when she wears a push-up bra with a deep breast in healthy women. cleavage top, whenever she goes out, she feels as if her breasts are ‘more present’, and she is more aware of her The absent breast (1) breast sensation. Most respondents were not aware of (sensation in) their breast during their daily life. The fact that their breasts The well-functioning breast (2a) were ‘absent’ was mentioned as a positive aspect. At the If asked about breast sensation, all respondents who beginning, it was difficult to interview healthy women gave breastfeeding would spontaneously mention this. about their breast sensation which was not actively The sensation was described as a total different and new sensed. Moreover, our respondents said that sensation sensation of the breast (e.g. lactation, breast engorge- of the breast is an unfamiliar topic in conversations ment etc.). Although, for some breastfeeding was associ- among friends. ated with unpleasant sensations of the breast e.g. nipple During the interviews, hypothetical questions were pain, fissures, painful breast engorgement, etc., they re- asked like: ‘if you had no sensation in your breast, would membered it as a valuable experience and seemed to you miss it?’. Paradoxically, all women would answer have forgotten the pain that came with it. Some women yes. Respondents who would choose for reconstructive mentioned that being able to give breastfeeding would breast surgery, if they ever needed to undergo a mastec- be an important factor if they had the choice about the tomy, would choose for a reconstruction with sensation, timing of the prophylactic mastectomy, they would wait if given the option. Respondents saw it as an extra until after their family was complete. advantage and mentioned it would be strange if Some women described the breast to be more sensitive somebody touched their breasts and they would not be in certain periods of the menstrual cycle, this was de- able to register this, as normally this is an intimate place scribed as unpleasant but not necessarily painful. How- to be touched. Although, they found it very difficult to ever, they preferred not to be touched on their breasts give specific examples of situations in which the lack of during this period. sensation would bother them. Mostly, the sensual The breast and especially the nipple-areola complex sensation was mentioned to be missed, but also a feeling have another function, the nipple is considered an of security. erogenous area. However, our respondents explained Some respondents answered that it would make an that touching of the nipples did not cause significant important difference whether only one or both breasts arousal and was not considered as an important erotic would have no sensation. They indicated that having one body part during sexual interaction. Cornelissen et al. BMC Women's Health (2018) 18:82 Page 4 of 7 Table 3 Illustrating quotes of the seven identified themes of the phenomenon ‘breast sensation’ in healthy women with the respondents number Theme Quote 1 The absent breast 7 The thing is, off course I am not aware of my breasts, not even now. 10 If you are asking me about these topics I am thinking ‘Oh yes I am aware of my breasts’. But in the moment, not so much, they are just always there … So, they have become part of my body and how my body works and reacts in certain environments. 5 The fact that you are not aware (of your breast) is pleasant and will interfere with the way I describe sensation. Because they are just part of my body and I am not aware of them. It would be a pity (if I did not have sensation). But it is not something I would worry about. However, I am not sure. And off course it matters if sensation would be gone in one or both sides … I don’t think it would be such a big thing if I would still have sensation on one side. 2 The present breast 10 If I menstruate, I feel them a little bit more, it is an unpleasant sensation. If you don’t have your period you feel freer and don’t have to think about anything. 9 I don’t find performing self-breast-exam annoying. I just feel neutral about it I just do it quickly, once a month Sometimes I feel pain, right before I have to menstruate, that is a very painful sensation in the breast. 2a The well-functioning breast 2 That that body can carry a child, can bear a child and can feed a child. I find that very pleasant. ‘Oh that is what these breasts are also for’. 2b The feminine breast 6 I would miss it (sensation in the breasts), but I don’t think… I would not feel less feminine… I think the aesthetic appearance of the breast are more important to feel feminine than sensation. 2c The sensual breast 3 Well, my partner thought it was amazing (breasts in an intimate setting). I thought, well if this is part of intimacy, well ok then. But me myself I did not find it special. 2d The alien breast 2 Sometimes I have to hold them while playing sports, and then it becomes almost a thing like during a mammography, a separate thing… That breast is pressed completely flat in between two plates and off course that is a very strange experience. A thing hanging from your body, I don’t like it at all… As if the breast is being taken away from you. I like to think of the breast as something round… That might nog be very realistic, if you see what kind of breasts there are. But the form changes (makes flat gestures with her hands) and that seems strange to me. 2e The safe breast 10 It might be scary (to have a breast without sensation) because I would think that if a body part is been operated you would be extra focussed on this body part and that you would want to know how it is doing. And if you don’t feel anything anymore, you would lose control… But I also think it (sensation of the breast) is important to regain trust in your body… For example, this might be a strange comparison, but I have injured my ankle once and during revalidation sensation was very important to see if I could move it and if it was going well with my ankle. 7 It is not a pleasant sensation (sensitive breast during menstruation), but it is more like I know that my body is working right... You can trust a little bit on your body, I know by the sensation of my own breasts ok I will have my menstruation with a few days… It is a confirmation that everything is well, you know. And that is pleasant although the sensation is a bit painful. 5 Because you know, for me the main reason to undergo a preventive mastectomy would be to get some security. And I think that if you cannot feel a piece, I think that, that would give me a very insecure feeling. There is a piece on my body, but I can’t feel it. For me that would be very unpleasant. The feminine breast (2b) intimate setting was experienced as pleasant by our re- Most respondents thought that having sensation or not spondents. However, most respondents do not think, in their breasts, would not influence their femininity. they would miss the contributing factor of the nipple to Whereas having breasts or not was thought to influence arousal. Most women had the idea that their male part- their femininity. Almost all respondents named restoring ner enjoyed touching the nipple more than they did. the appearance of a natural looking breast as the main Most respondents did enjoy seeing their partner being reason to choose for a breast reconstruction. One re- aroused by their nipple. spondent thought she would be able to feel feminine wearing clothes and external prosthesis, however she The alien breast (2d) would not feel feminine in a bathing suit or naked after Some respondents explain that when the breast loses the a mastectomy. normal round shape, they feel as if it is no longer a breast, but rather a ‘thing’ hanging from their body. The sensual breast (2c) Mammography was the most named source of this feel- The nipple is considered an erogenous area and be- ing. But also during sports women experienced their comes erectile during arousal. Being touched there in an breast as not feeling like a breast. Cornelissen et al. BMC Women's Health (2018) 18:82 Page 5 of 7 The safe breast (2e) insecurity because of an absent breast, which paradoxically One respondent found it paradoxical that if she would is more ‘present’ because it becomes ‘impaired’ after sur- choose for a risk-reducing bilateral mastectomy and her gery. To these women the information about sensation reconstructed breasts would have no sensation, she after the operation, might be even more contributing to would not feel safer at all. However, this was the goal to the decision to undergo a prophylactic mastectomy. undergo this operation to begin with. Another respond- As was stated by one of our responders she would not ent compared it to having an injured ankle, to her it feel safer at all after a breast reconstruction without sen- would be strange to have no sensation in an impaired sation. On the contrary, she would feel less safe if she body part, because normally sensation increases in an would not have sensation in an ‘impaired’ breast. In impaired body part and warns the body whenever there women with a higher oncological risk, sensation might is a problem. be even more important. However, further qualitative re- Some respondents, described hypersensitivity of their search in genetically predisposed women is necessary. breast during certain periods in their menstrual cycle Interestingly, the erogenous sensation does not seem and experienced it as a confirmation that their body was to play a major role in breast sensation according to our still functioning ‘normal’, although they experienced this results. Our respondents indicated that mainly their sensation as unpleasant. For one respondent, this was partner enjoyed their breasts during an intimate setting, the reason to change from an intrauterine hormonal de- however for this function erogenous sensation is not ne- vice to oral contraceptives, in order to be able to have a cessary. This might be clinically relevant, because tech- menstrual cycle again. nically we are able to perform a microsurgical nerve coaptation and restore breast sensation, light touch [6]. Discussion However, restoration of erogenous sensation is rather an Not much literature is written about sensation of the exception [10]. Previously, it was thought that nerve co- breast, the literature that is written focuses on ‘negative’ aptation was not worthwhile if erogenous sensation could sensation (pain) [23–28]. This is to be expected accord- not be restored, this might be correlated to the number of ing to the theory of Leder [29], generally, there is no female plastic surgeons, this used to be only 0.2% in 1959, awareness of healthy body parts, once body parts are im- now the number of female plastic surgical trainees is 37% paired, one suddenly becomes aware of those body parts. [31], which might explain the renewed interest. This study shows that breasts mostly live an unnoted Another interesting fact, which might have clinical life, which is considered a positive thing. However, in relevance is that some respondents indicate that having our clinic after a breast reconstruction, patients will one breast with normal sensation would be sufficient. complain about their breasts not feeling like their own Currently, in unilateral breast reconstruction often the and paradoxically the breast(s) become(s) ‘more present’ contralateral, healthy, breast is operated on to sym- although no breast sensation is present. metrize the result. According to our results it might be Our respondents stated that sensation was not needed important to discuss the implications for breast sensa- to feel feminine, however a beautiful natural looking tion of having a correction on the ‘healthy breast’,in breast is, for our respondents this would be the main order to adapt the surgical plan according to your reason to choose for a reconstruction. This is note- patient’s wishes. worthy, since in reconstruction restoring function is nor- This study was meant to find out what qualitative as- mally the main goal. E.g. after leg amputation function pects of breast sensation are important and to lay the can be restored by using running blades, which do not basis to develop a proper evaluation tool. Up until now, resemble a normal leg at all nor are aesthetically pleas- we can only rely on quantitative sensation measure- ing [30]. ments and existing questionnaires like the general ques- Remarkably, our respondents described a link between tionnaires (SF-36, EORTC, Body image scale) and the appearance and sensation; if a breast loses the round disease specific questionnaire (BREAST-Q). However, shape e.g. during a mammography, the breast is also none of these focus on (positive) sensation of the breast sensed differently, like a ‘thing’. If the breasts are more after breast cancer treatment. Developing a new tool present e.g. in a push-up bra, the breasts are sensed specified on positive breast sensation, might improve the more actively. This emphasizes the importance of a nat- way of evaluating the results of innervated breast recon- ural looking breast after reconstruction also for the re- struction and provide higher quality evidence, which is gain of sensation. needed to be able to implement this technique in The goal of mastectomy in prophylactic cases is differ- national guidelines. ent compared to surgery after a malignancy. These We are aware of the fact that this study was performed women do not want to go from an insecurity because of among healthy women and these results cannot be possible malignancy in the future to a daily-based extrapolated to women treated for breast cancer. This Cornelissen et al. BMC Women's Health (2018) 18:82 Page 6 of 7 study was merely meant to provide a frame of reference 3. 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BMC Women's HealthSpringer Journals

Published: Jun 1, 2018

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