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From "no big deal" to "losing oneself": different meanings of mastectomy
Umeå University, Faculty of Medicine, Department of Nursing.
Umeå University, Faculty of Social Sciences, Department of Social Work.
Umeå University, Faculty of Medicine, Department of Nursing.
2012 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 35, no 5, E41-E48 p.Article in journal (Refereed) Published
Abstract [en]

Background: Because of early detection and advanced treatment options, more women with breast cancer survive after mastectomy and thus have to face the choice of living with or without a reconstructed breast for many years to come. O

bjective: This article investigates these women’s narratives about the impact of mastectomy on their lives, as well as their reflections on breast reconstruction.

Methods: Fifteen women were strategically chosen from a previous population-based study on mastectomy. They were contacted for further exploration in thematic narrative-inspired interviews 4.5 years after mastectomy.

Results: Three types of storylines were identified. In the first storyline, the mastectomy was described as ‘‘no big deal’’; losing a breast did not disturb the women’s view of themselves as women, and breast reconstruction was not even worth consideration. In the second storyline, the women described the mastectomy as shattering their identity. Losing a breast implied losing oneself as a sexual being, a woman, and a person. The third storyline fell in between the other two; the sense of femininity was wounded, but not to the extent that they felt lost as women.

Conclusion: Our findings suggest that the experience of mastectomy due to breast cancer is very much individual and contextual. Losing a breast may be of minor or major importance.

Implications for Practice: Healthcare practitioners should be attentive to how the women themselves experience the personal meaning of losing a breast and guard against vague preconceptions based on the breast-sexuality-femininity discourse and its connection to what the patient needs.

Place, publisher, year, edition, pages
Philadelphia: Lippincott Williams & Wilkins, 2012. Vol. 35, no 5, E41-E48 p.
Keyword [en]
body image, breast cancer, femininity, mestectomy, reconstruction, sexuality
National Category
Nursing
Identifiers
URN: urn:nbn:se:umu:diva-47834DOI: 10.1097/NCC.0b013e31823528fbISI: 000308354000006OAI: oai:DiVA.org:umu-47834DiVA: diva2:444774
Available from: 2011-09-30 Created: 2011-09-30 Last updated: 2017-12-08Bibliographically approved
In thesis
1. I spåren av bröstcancer: att leva med eller utan ett rekonstruerat bröst efter mastektomi
Open this publication in new window or tab >>I spåren av bröstcancer: att leva med eller utan ett rekonstruerat bröst efter mastektomi
2012 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Bakgrund: I Sverige är bröstcancer den vanligaste formen av kvinnlig cancer och utgör nära en tredjedel av kvinnlig cancer. I behandlingen av bröstcancer har kirurgi en betydande roll. Nära hälften av kvinnorna genomgår mastektomi, men det finns en stor variation inom landet. Att förlora ett bröst efter mastektomi har såväl en kroppslig som psykologisk innebörd. Avhandlingen omfattar fyra delstudier som beskriver detta på olika sätt.

Syfte: Det övergripande syftet med avhandlingen är att studera betydelsen av att förlora ett bröst på grund av cancersjukdom samt motiv och beslutsprocess i ställningstagande till att leva med eller utan ett rekonstruerat bröst.

Metod: Avhandlingen baseras på två populationer av kvinnor boende i norra Sverige som genomgått mastektomi på grund av bröstcancer: de kvinnor som genomgått mastektomi under 2003 (delstudie I–III) samt de kvinnor som genomgått mastektomi mellan oktober 2006 och september 2007 (delstudie IV). Dessa kvinnor identifierades via det regionala cancerregistret, onkologiskt centrum, Norrlands universitetssjukhus. Statistiska analyser genomfördes i delstudie I och IV och tematisk narrativ analys har tillämpats i delstudie II och III.

Resultat: Delstudie I: År 2007 skickades ett nykonstruerat självskattningsformulär ”Life After Mastectomy” (LAM) ut till 149 kvinnor varav 85% (n=126) besvarades. Av dessa kvinnor hade 25% genomgått bröstrekonstruktion. Resultaten av en multipel regressionsanalys visade att bröstrekonstruktion var signifikant relaterat till lägre ålder, känsla av att vara attraktiv och sexuellt intresse. För att få en djupare och mer nyanserad förståelse kring innebörder av att förlora ett bröst efter mastektomi och motiv till att avstå från eller genomgå bröstrekonstruktion gjordes ett strategiskt urval av 15 kvinnor från delstudie I som deltog i en forskningsintervju(delstudie II). I den tematiska narrativa analysen identifierades tre typberättelser. I den första typberättelsen beskrevs mastektomin som ”no big deal” och att genomgå en bröstrekonstruktion var inte ens värt att överväga. I den andra typberättelsen beskrevs mastektomin som ”att förlora sig själv” och en bröstrekonstruktion beskrevs som ett sätt att återställa sig som person, kvinna och sexuell varelse. Den tredje typberättelsen intog en position mellan ”no big deal” och ”att förlora sig själv” och en bröstrekonstruktion beskrevs som ett välkommet erbjudande vilket gjorde det enklare att se och känna sig som kvinna. I delstudie III undersöktes sex kvinnors erfarenheter av att genomgå bröstrekonstruktion. Samtliga kvinnor var oförberedda på den krävande procedur som de genomgick. De beskrev processen som svår och smärtsam med upprepade operationer och en oväntat lång konvalescenstid. Även om kvinnorna var oförberedda på hur tufft det skulle komma att bli både fysiskt och emotionellt beskrevs bröstrekonstruktionen  som betydelsefull för dem. Delstudie IV: I denna uppföljningsstudie inkluderades kvinnorna 10 månader efter mastektomin då självskattningsformuläret LAM skickades ut. Datainsamlingen med samma formulär upprepades två år senare (tre år efter mastektomin). Kvinnornas (n=76) känsla av attraktivitet och kvinnlighet hade inte förändrats mellan de två mättillfällena, med undantag för vissa aspekter av sexualitet som hade försämrats. Vid uppföljningen hade 21% av kvinnorna genomgått bröstrekonstruktion och dessa kvinnor var yngre. I övrigt kundeinga signifikanta skillnader ses mellan de kvinnor som genomgått respektiveej genomgått bröstrekonstruktion.

Slutsats: Denna avhandling ger en inblick i betydelsen av att förlora ett bröst efter mastektomi. Att förlora ett bröst efter mastektomi kan vara av mindre eller större betydelse. För de kvinnor som upplevde bröstförlusten som en förlust av sig själva, kom en bröstrekonstruktion att betraktas som en livsnödvändighet (delstudie II). De flesta av kvinnorna 75% i delstudie I och 79% i delstudie IV genomgick inte någon bröstrekonstruktion. De kvinnor som genomgick rekonstruktiv kirurgi beskrev proceduren som svår fysiskt och emotionellt, men trots detta sågs den som viktig för dem (delstudie III). Vid uppföljningen i delstudie IV, var kvinnornas upplevelse av attraktivitet och kvinnlighet oförändrade, men upplevelsen av att känna sig bekväm vid sexuell intimitet utvecklades negativt. Detta var oberoende av om kvinnan genomgått bröstrekonstruktion eller inte, vilket kan ses som överraskande. Det är viktigt att som sjukvårdpersonal uppmärksamma hur den enskilda kvinnan själv upplever betydelsen av att ha förlorat ett bröst för att inte låta sig styras av vaga schabloner kring relationen bröst–sexualitet–kvinnlighet.

Abstract [en]

Background: Breast cancer is the most common cancer in women, representing nearly one-third of all cancer cases among women in Sweden. The mainstay in breast cancer treatment is surgery and nearly half of the women undergo a mastectomy but there is considerable variation between different counties. Understanding the impact of losing a breast and what motivates women to decide for or against breast reconstructive surgery after mastectomy is necessary in caring for women affected by breast cancer. This PhD thesis comprises four studies that examine this topic in different ways.

Aim: The overall aim of the thesis is to explore meanings of losing a breast after mastectomy and what motivates women to opt for reconstruction or no reconstruction of the lost breast.

Methods: The thesis is based on two populations, all women who underwent mastectomy in 2003 (Studies I–III) and all women living in northern Sweden who underwent mastectomy during November 2006 to October 2007 (Study IV). The women were identified by the Oncological Centre, at Umeå University Hospital, Umeå, Sweden. In Studies I and IV statistical analyses were performed while in Studies II and III thematic narrative analyses were applied.

Results: Study I: in 2007 149 women received a newly developed selfreported questionnaire titled ‘Life After Mastectomy (LAM)’. In total 85% (n=126) of the women completed and returned the questionnaire, 25% of whom had undergone breast reconstruction. Multiple regression analysis showed that these women were younger and scored lower on feelings of attractiveness and higher on sexual activity compared with the women who had opted not to have breast reconstruction. In Study II, to gain a more nuanced understanding of the women’s lived experiences of losing a breast and what had motivated them to opt for or against breast reconstruction, a strategic sample of 15 women from Study I were selected to participate in a research interview. Using thematic narrative analysis of the interviews we identified three types of storylines. In the first storyline the mastectomy was described as ‘no big deal’ and breast reconstruction was not even worth considering. In the second storyline the mastectomy was described as a ‘loss of self’ and the breast reconstruction was perceived as a means to be restored as a person, a woman and a sexual being. The third storyline fell in between ‘no big deal’ and ‘loss of self’, with breast reconstruction described as a welcome offer that made it easier to look and feel like a woman. In Study III, a pilot study, we explored six women’s experiences of undergoing breast reconstructive surgery. All women had not been prepared for the strenuous experience: the process was described as difficult and painful, consisting of several operations and an unexpectedly long recovery period. Although the women were ill prepared for how arduous it would be, both physically and emotionally, having a breast reconstruction had been important to all of them. Study IV: in this follow-up study, women completed the self-reported LAM questionnaire 10 months after mastectomy and again 2 years later, i.e. about 3 years after mastectomy. It appeared that their feelings of attractiveness and femininity had not changed during the follow-up time, except for some aspects of sexuality which had been negatively affected. At follow-up, 21% of the women had undergone breast reconstruction. When comparing these women with those who had not undergone reconstructive surgery, we found no significant differences apart from their younger age.

Conclusion: This thesis provides insight into the meanings of losing a breast due to mastectomy. Loss of a breast can be of minor or major importance. For those women who experienced the loss of a breast as a loss of the self, breast reconstruction became a necessity for restoring personhood (Study II). However, most women studied, 75% in study I and 79% in study IV, chose not to undergo breast reconstruction. Those who did, described it as a very tough procedure, both physically and emotionally. Having a breast reconstruction had been important for them (Study III). After a 2-year follow-up of the women (Study IV), their feelings of attractiveness and femininity were unchanged, but not their experiences of sexual intimacy and comfort, which had decreased regardless of whether they had undergone breast reconstruction or not. This finding was unexpected. It is important for health care professionals to be attentive to how women themselves experience the personal meaning of losing a breast. Care professionals should guard against popular preconceptions of the female breast and how it is associated with sexuality and womanliness, and hence of the patient’s needs.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet, 2012. 60 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1513
Keyword
body image, breast cancer, breast reconstruction, femininity, mastectomy, narrative research, sexuality, bröstcancer, bröstrekonstruktion, intervjuer, kroppsuppfattning, kvinnlighet, mastektomi, narrativ forskning, sexualitet
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-58384 (URN)978-91-7459-457-7 (ISBN)
Public defence
2012-09-21, Aulan, Vårdvetarhuset, Umeå universitet, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2012-08-30 Created: 2012-08-29 Last updated: 2012-08-30Bibliographically approved

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