Highlights
- •Psychological stress, and loss of self-confidence as women occur after mastectomy.
- •Acceptance is important for positive thinking.
- •Talking and listening to different persons help to face with different situations.
- •Information and follow-up from the same doctor and nurse are wished.
Abstract
Purpose
Breast cancer is a significant health issue all around the world and the most frequent type of cancer among Swedish women. The aim of this study was to explore and describe life situations of Swedish women with breast cancer after mastectomy.
Methods
A qualitative study with semi-structured interviews was conducted by using an interview guide concerning experiences of changes in the women's daily lives and functions. Thirty-three women with breast cancer having undergone mastectomy participated. The data from the interviews were subjected to content analysis.
Results
Six categories emerged: Embarrassment with body image and loss of femininity; Feelings of fear, worry and anxiety; Better appreciation of life; Support from different sources; Experiences of care from health care professionals; and Need of information and follow-up care.
Conclusion
The women's body image limits their daily lives, and psychological distress reminds them of their disease. Reception of support from family and healthcare professionals and perception of positive life are important. Sometimes there is a lack of information and follow-up from healthcare professionals, who should be aware of the women's feelings and needs.
Keywords
1. Introduction
Breast cancer is a significant health issue for women all around the world, and in Sweden it is the most common type of cancer among women. Every day, twenty Swedish women receive the diagnosis of breast cancer (
National Board of Health and Welfare, 2018
). Breasts are emphasized by the society as a symbol of femininity, motherhood and sexuality (Sukartini and Sari, 2021
; Webb et al., 2019
). The loss of a breast or both breasts after mastectomy may lead to feelings associated with mental image, anxiety, depression, reduced sexual attraction, hopelessness, fear of recurrence, and suicide (Cebeci et al., 2012
; Jørgensen et al., 2015
; Kunkel et al., 2002
).The quality of life after breast cancer treatment is associated with body image (
Bagheri and Mazaheri, 2015
) and has become increasingly important. After such treatment, women face many changes of their lives and encounter numerous traumatic experiences of disfigurement (Aerts et al., 2014
; Sun et al., 2017
). Women having undergone mastectomy have reported an unfamiliarity with their new body that affects their sexuality and sexual function. They have also reported distress over scars, reduced sense of attractiveness, fear of rejection from their partners, and loss of femininity (Fang et al., 2013
; Klaeson et al., 2011
). The women's experience of change in body image as a result of mastectomy gives rise to psychosocial problems (Drageset et al., 2016
). Also, the women have to deal with traumatic physical and psychological experiences of their diagnosis of breast cancer and of treatment that disrupts their daily lives and often leads to a poor quality of life (Siqueira et al., 2020
).After mastectomy, the options are to undergo breast reconstruction, wear a loose prosthesis, or do nothing to make up for the loss of a breast or both breasts. The removal of an entire breast causes a loss of symmetry and a change of physical appearance. These changes are evident also on the clothed body and have an impact on clothing. They often give rise to practical and emotional challenges (
Brunet et al., 2013
; Odigie et al., 2010
) which the woman has to deal with on an everyday basis for the rest of her life. Women commonly choose breast reconstruction because they want to avoid an external prosthesis, feel whole again, regain femininity, and have less clothing limitations (Gershfeld-Litvin, 2021
). Those who choose a breast reconstruction are significantly younger than those who do not (Fallbjörk et al., 2012
; Panchal and Mathos, 2017
; Wehrens et al., 2005
). Also, they have higher incomes (Alderman et al., 2011
) and are likely to be white (Panchal and Mathos, 2017
). Most women are satisfied with the outcomes of their breast reconstructions (Siqueira et al., 2020
).Oncological treatment of breast cancer causes side-effects that can impair the physical and psychological wellness of the women. It is important for healthcare professionals to recognize issues related to the quality of life of women with breast cancer and be aware of other problems concerning the women's needs and perceptions of their care. Giving professional psychosocial support to patients after mastectomy is an important responsibility of the nurse. The present qualitative study was carried out in Sweden with focus on women's experiences of their quality of life after mastectomy. It should contribute to further understanding and improvement of cancer patients' health. Its aim was to explore and describe the life situations of Swedish women with breast cancer after mastectomy.
2. Methods
2.1 Design
A qualitative study with semi-structured interviews was conducted. The use of qualitative method provided rich information that helped to understand the life situations of women after mastectomy (
Burnard et al., 2008
). The study was carried out in Uppsala, Gävle and Falun, cities in the Mid-Sweden Health Care Region, where we had contacted breast cancer nurses at oncology clinics who voluntarily supported our study.2.2 Participants
The participants were selected by use of purposive sampling from a list of 481 patients with breast cancer provided by the Regional Cancer Centre in Uppsala and Örebro (
Phoosuwan and Lundberg, 2022
). The inclusion criteria were women (1) of age 18 years or more having no mental diseases, (2) having breast cancer diagnosis since 1-3 years and having finished treatment, (3) having undergone mastectomy, and (4) being willing to participate. The first 70 patients from the list fulfilling the criteria and living in Uppsala (n = 30), Gävle (n = 20) and Falun (n = 20) were invited to participate. Thirty-three of them (14 from Uppsala, 10 from Gävle and 9 from Falun) accepted. Nineteen did not participate for reasons such as not being contactable by telephone and having changed home address, while 18 said that they did not have time.2.3 Ethical considerations
Approval was given by the Ethics Committee of Uppsala University (Dnr, 2012/398), and the ethical requirements outlined in the Declaration of Helsinki were fulfilled. The participants, fully informed about the purpose of the study, assured of anonymity and confidentiality, and told that anyone could drop out at any time, had given informed consent verbally and in writing. Alphabetical codes were used to identify the transcribed data.
2.4 Data collection
An interview guide was developed. It had nine open-ended questions concerning experiences of changes in the women's daily lives and functions after mastectomy. These questions were as follows: (1) Can you describe how your breast cancer was discovered? (2) How have you been influenced by your culture and religion in connection with the operation? (3) What has been changed after the operation according to your experience? (4) What questions have you asked yourself after the operation? (5) Can you describe in which way your quality of life in general has been influenced by the operation? (6) Can you describe some experiences of uncertainty you have had because of your appearance after the diagnosis, and before and after the operation? (7) Can you tell experiences related to how you function together with your spouse or partner, your family, your children, your friends, and at your workplace? (8) What do you consider important for women in your situation? (9) Is there something you would like to add?
Background information was requested at the end of the interview guide. The questions were tested with three women fulfilling the inclusion criteria but not participating. The results showed that the interview guide was adequate.
2.5 Procedure
The participants received by post information about the study and their rights, and a consent letter. Place and time for the interviews were agreed by telephone. The consent letter was signed and sent back. As a preparation for data collection, the first author, with experience of using qualitative method, trained four research assistants in interview technique and data analysis. Each participant was visited in her home by two of the research assistants. One of them carried out the interviews, each lasting 30–75 min, while the other rechecked the interview data and made notes. Sometimes, the participants were asked to clarify. While the participants narrated their experiences, their facial expressions and gestures were observed and noted. The interviews were audio recorded. Although new information ceased to emerge after about 29 interviews, we interviewed also the last four women to make sure that saturation had been reached with regard to the main topics. The recorded interviews were transcribed verbatim.
2.6 Data analysis
The data from the interviews were analysed by use of qualitative content analysis (
Burnard et al., 2008
). This method is well suited for analyzing multifaceted, important, and sensitive life situations of women after mastectomy. The data analysis was carried out separately by the authors and the four research assistants, and the findings were checked and discussed together. The transcripts were read repeatedly to obtain overall sense and make reflective notes. The analysis began by highlighting sentences of importance and dividing them into meaning units. In the second step, the meaning units were condensed and labelled with short codes. In the third step, the codes were compared to identify similarities and differences. In the fourth step, categories were developed based on codes which included manifest content. In the fourth step, finally, emerging categories were tested and revised through analyses of the interviews. The outcomes were discussed and modified to ensure reliability. Peer checking, validation of emerging codes and categories, and debriefing by two experts of the research method and the subject were used to enhance credibility. Disagreements were discussed until consensus was reached (Krippendorff, 2013
).Trustworthiness (
Lincoln and Guba, 1985
) was addressed in several steps: creditability, confirmability, dependability, and transferability. Creditability was achieved by interviewing participants with various characteristics in terms of age, civil status, education and treatment, and the results were discussed in seminars with participation of other researchers. Confirmability was strengthened by using researchers who were experts in qualitative methods and by letting participants recheck their answers during the interviews. The use of tested interview guides, field notes and separate analyses increased the dependability. Transferability was assured by providing thorough descriptions of the contents and methods.3. Results
The participating women (n=33) were 37–73 years old. Most of them were in stage two of breast cancer at their diagnoses. Twenty-one had received chemotherapy, 12 had received radiotherapy, 27 had received hormonal therapy, and eight had been treated by Herceptin. Fourteen had gone through breast reconstruction, eight had a plan for breast reconstruction, and eleven declined breast reconstruction. See Table 1.
Table 1Demographic background and characteristics of the women with breast cancer.
| Characteristics | Participants (n = 33) |
|---|---|
| Age Mean (range) | 52.7 (37 – 73) |
| Civil status Married Partner Single | 11 13 9 |
| Educational level High School University | 9 24 |
| Stages of cancer Stage 1 Stage 2 Stage 3 | - 24 9 |
| Treatment Mastectomy Chemotherapy Radiotherapy Hormone therapy Herceptin | 33 21 12 27 8 |
| Breast reconstruction Yes Plan No | 14 8 11 |
Six categories emerged: (i) embarrassment with body image and loss of femininity, (ii) feelings of fear, worry and anxiety, (iii) better appreciation of life, (iv) support from different sources, (v) experiences of care from health care professionals, and (vi) need of information and follow-up care.
3.1 Embarrassment with body image and loss of femininity
For the participating women breast meant femininity, beauty, attraction and motherhood. After mastectomy, it was difficult for them to accept the situation of not having both of their breasts. They still wanted to feel like being women, and they did not want to be reminded about their disease. Some elder women did not care about having only one breast. They chose to use prosthesis or to do nothing. In contrast, some younger women felt that they had lost their femininity and wanted breast reconstruction. They expressed that they felt nervous at public places. Some women using prosthesis felt uncomfortable, particularly in warm summer weather. Some women subjected to breast reconstruction felt better. They felt like women again because of their improved appearance.
I don't feel like a woman after removing my breast. I am concerned about my appearance and I want to feel that I am still a woman. If I use prosthesis, it is not the same thing. I want to be able to wear what I want. (46 years old, single)
Now I can do almost what I did before reconstruction. Using prosthesis every morning reminded me about cancer. I feel quite beautiful again. I feel like being myself. My new breast is very beautiful and looks like the other … (49 years old, married)
Many women suffered from the changes of their bodies. After mastectomy, some women had problems with their relationship with husband or boyfriend, and with sexuality.
I am a victim of mastectomy. You have to use prosthesis and be unable to do things as usual. My sex life was affected very much. Having intercourse was very painful. My femininity and ability to have children were gone … (37 years old, partner)
Removal of a breast can make women avoid social situations and face with a limited social life. The women felt that their appearance was non-proportional and ugly after mastectomy. Therefore, they avoided looking at their body and tried to cover or hide it.
I have very strong feelings when I go into the water in the summer. People around me react. I cannot go to a swimming hall when there are children (laugh). I had no problem before to take a shower together with other women in the swimming hall, but now I feel uncomfortable when I do, especially when there are children (laugh). They can run and stand in front of me and look. (57 years old, married)
3.2 Feelings of fear, worry and anxiety
All women expressed their feelings of fear, worry and anxiety when they received their diagnoses of breast cancer and information about removal of one of their breasts or both. Most of them had psychological distress after mastectomy. They felt mental distress when thinking about their disease, and they had difficult and frustrating periods after diagnoses, while waiting for mastectomy, and after. They were shocked, depressed and afraid of spreading of their cancer. They did not know what would happen, and some said that they started to cry. After mastectomy, the women's experiences of their changed bodies were accompanied by strong emotional reactions. Some of them felt hopeful because of still being alive after operation, but others had no hope that they would ever become healthy again. They became anxious and preoccupied with thinking about a return of their cancer.
I was shocked when they told me that my breast had to be removed … my grandmother died from breast cancer. I felt very sad and I was anxious about what would happen to me. One month after mammography and two weeks after diagnosis I had an operation. It was very hard for me but I got great help. (46 years old, single)
I think that my quality of life is worse because of the removal of a breast. It was very difficult and different from having (just) one leg. I think all the time that it is hard for me. (57 years old, married)
3.3 Better appreciation of life
Many of the women described that after mastectomy they appreciated their life better than they did before. They thought about what to do for their families. “Acceptance” was an important word. They tried to accept what they faced as they were not able to control the disease, the treatment and many other things. This was the best to do for themselves. They also thought about what would happen now rather than in the future. It was important for them to be discreet about their disease and treatment. Some women mentioned that they should be positive and think about life rather than about cancer. They should be able to talk about their problems and laugh.
I worked as usual. I am an airhostess. Many of my colleagues who had breast cancer had sick leave. They did not feel able to work. I worked until the last day before operation. I did what I preferred and tried to appreciate my life … It is good for me to keep my daily life so that I have no time to think about my situation. (49 years old, partner)
3.4 Support from different sources
The participating women received support from family, friends, priests and organizations who talked and listened to them. Some women living alone expressed that they felt lonely when facing their situations and needed someone to talk with.
I heard from my husband “how are you?” and “I love you”. When I heard I felt better than before. (58 years old, married)
I have received great support from my friends. I can talk with them and they listen to me. I was divorced after having been married for 25 years. My daughter, colleagues and friends have actually been very important … Now I have a partner living apart. I can talk with him every day and he supports me. (62 years old, partner)
Several women described that they had been supported by priests and contact persons from breast cancer organizations with whom they could talk. Some women had been supported by their employers and colleagues.
I belong to the Swedish church. The priests I know said to me that they prayed for me. They also talked and listened to me. I became very tired when I went to both radiotherapy and chemotherapy. After one and a half years I felt almost normal again. (61 years old, single)
3.5 Experiences of care from healthcare professionals
Most of the women had positive experiences of receiving care and treatment from healthcare professionals who they felt had good knowledge and positive attitude towards their work. They were informed by medical doctors and breast cancer nurses. All women were supported mentally by psychologists or counsellors. They had received talk therapy and had participated in yoga 1.5–2 h. They had also met women in the same situation for discussions and coffee. Some women had participated for a couple hours in the course “Look good and feel good” in which the women helped those of them who had lost their hair with make-up and shawls.
I think it is very important to have someone near when you need. I know that there are two breast cancer nurses and I can talk with them when I need. Psychologist and counsellor are also available at the hospital, so we can go and talk with them if we want. (50 years old, partner)
3.6 Need of information and follow-up care
Most of the women had received good care during their treatment at the hospital. They mentioned that they needed information about the whole process of operation, treatment and side effects. Some women described that in the beginning, before operation, they did not know what they faced. This was a very difficult situation in their lives. They did not know how much the cancer had spread, and having to remove a whole breast felt difficult. They wanted the same doctor and nurse for their treatment and follow-up care. Some women wanted a female doctor if possible. They believed this would make it easier to talk about their feelings and problems.
At the hospital the personnel were good. The negative thing was that I got different doctors all the time. It was not fun. I think we should get the same doctor throughout the process. (46 years old, single)
I was still so bad when I came home. Dressing was really hard for me. It hurt, and fluids and blood came out of the wound. I think someone should have come to help me. When I was a little stronger I could go to the healthcare centre for dressing. I wish to have someone visit and check-up at home during the first week. That would be perfect. (69 years old, partner)
Some women mentioned that they had not been helped and supported when they needed. They thought that the staff did not have time. They also indicated that the medical care was not in accord with the healthcare guarantee which states that the patient shall have the opportunity to meet a doctor for treatment within 90 days.
The three-month healthcare guarantee did not work. The doctor told me that I could have reconstruction in January but I got the first reconstruction on 1st October. I contacted several hospitals: Göteborg, Luleå, Umeå and Malmö. For one of them I would have had to go through half of Sweden even though I had my doctor and hospital ten minutes away from where I lived and felt safe. (53 years old, married)
4. Discussion
4.1 Body image, loss of femininity and sexuality
The finding that the women were embarrassed with their body image and loss of femininity is in accord with several studies. Mastectomy not only gives rise to physical changes but has effect on the body image and the quality of life (
Bagheri and Mazaheri, 2015
), and changes in body image are accompanied by negative psychological consequences (Fouladi et al., 2013
; Jørgensen et al., 2015
; Piot-Ziegler et al., 2010
). Women realize that their sexual attraction has disappeared (Ussher et al., 2012
). Body image is a complex post-treatment concern, especially for younger women with breast cancer (Paterson et al., 2016
). Recovery of body image after mastectomy is essential for the physical and mental quality of life (Marin-Gutzkr and Sànchez-Olaso, 2010
; Zeighami Mohammadi et al., 2018
) and for regained emotional wholeness (Howes et al., 2016
; Siqueira et al., 2020
). In addition, the finding that after reconstruction the younger participants felt like women again, with improved appearance and sexuality, agrees with previous studies (Fallbjörk et al., 2012
; Panchal and Mathos, 2017
). Healthcare professionals should be aware of and sensitive to the issues of women's embodiment and its disruption in order to assess them during consultations for breast reconstruction. They should also facilitate couples' communication.One problem of the participating women because of their changed bodies after mastectomy was the sexual relationship with their husband or boyfriend. A woman's quality of life related to sexuality and sexual functioning is affected by the mastectomy (
Aerts et al., 2014
; Fobair et al., 2006
; Ganz, 2008
; Klaeson et al., 2011
; Sun et al., 2017
). Shaffer et al., 2021
found that internet intervention for couples addressing cancer-related sexual concerns was perceived as a valuable part of breast cancer care. Healthcare professionals should be aware of problems related to sexual intimacy and prepare helpful information for women and couples.4.2 Psychological distress but acceptance of situation
The strong emotional reactions after mastectomy experienced by the women in this study are in accord with previous studies (
Brunet et al., 2013
; Odigie et al., 2010
) showing that women face physical, emotional and social changes and difficulties after treatment. Emotional intensive coping and problem-solving intensive coping have been used by women after mastectomy (Sukartini and Sari, 2021
). Healthcare professionals should be aware of the physical and emotional changes that the women go through and provide information and psychosocial support (Chang et al., 2014
). Information about breast cancer and the necessity of undergoing mastectomy should give women with breast cancer increased knowledge and understanding so that they can better cope with their situation. Providing psychosocial support (e.g., using group support or facilitating for women in the same situation to talk with each other) and intervention programs for coping strategies to the women should be important tasks of healthcare professionals.The finding that after mastectomy most of the women appreciated their life better than they did before, and that they tried to accept what they faced is in accord with the finding by
Drageset et al., 2016
that most women experienced an increased appreciation of their lives, accepted their situations and made the best of their lives. Fallbjörk et al., 2012
showed that the experience of mastectomy is highly individual and contextual. Therefore, it is a challenge for healthcare professionals to play an important role not only for providing physical care but also for giving information, knowledge and attention that strengthens the individual woman's coping endeavours.4.3 Experiences of support and care
Social support is important as it helps women adjust to living with breast cancer (
Drageset et al., 2016
). The finding that the women received support from several sources, such as husband, partner, family, siblings, friends, priests, breast cancer organizations, employers, colleagues, and healthcare professionals is in accord with Suwankhong and Liamputtong, 2016
. They found that women with breast cancer received various forms of support that helped them cope with their situation. Primary needs of women with breast cancer are information, family support, counselling, and emotional support (Dsouza et al., 2018
). It seems that women with breast cancer having physical, psychological and social concerns require special care from multidisciplinary healthcare professionals. Therefore, it is an important role of these professionals to facilitate optimal delivery of healthcare that improves the quality of life of women with breast cancer, before as well as after mastectomy. The women should be encouraged to call if they need more support or information from different sources.The positive experiences of receiving care and treatment from healthcare professionals with good knowledge and positive attitude found in this study highlight that the women were satisfied. Doctor-patient communication and doctors' attitude have significant effects on the quality of life of women with breast cancer (
Zhou et al., 2014
). However, inadequate information and lack of follow-up from healthcare professionals were also mentioned by the women. Ferrari et al., 2018
found that women with breast cancer need better information about future health concerns and services from the hospital and that the clinician's role in cancer follow-up care is often poorly defined. This leads to a lack of awareness of the needs of survivors of breast cancer, insufficient communication with healthcare professionals, and an overall deficiency in the quality of care (Kenyon et al., 2014
). Healthcare professionals should be available as a resource that contacts the women and offers them face-to-face consultations that are a supportive, informative and confidential.The finding of this study that because of lack of time some of the women had not received help and support when they needed is consistent with findings by
Liptrott et al., 2020
showing that cancer patients often receive information that is insufficient to bring about continuity of their care. Continuity, availability, information and respect have been found to be essential aspects of professional support (Drageset et al., 2016
). It is important to create supportive messages and support groups for cancer patients (Repass and Matusitz, 2010
). Healthcare professionals should be sensitive. Also, they should provide not only standard care; the women want to be addressed personally with their needs and wishes.4.4 Strengths and limitations
This study was aimed at exploring and describing life situations of Swedish women after mastectomy with or without breast reconstruction. The use of qualitative method is a strength as it provides rich data for the understanding of such situations. These data are valuable as a basis for further investigations aimed at improving the quality of care of women with breast cancer. The study was conducted in three cities in Sweden, which may limit the transferability to other settings. In addition, the study is limited by its small sample size, and some women may have felt it difficult to describe their life situation during and after treatment. Yet, the in-depth interviews gave increased understanding of the women's life situation through their own words.
5. Conclusions
After mastectomy, the body image of women with breast cancer limits their daily lives, and psychological distress reminds them of their disease. Support from family and healthcare professionals and perception of positive life are important. After mastectomy, the women appreciate better their lives, accept the situations they face, and make things good for themselves. However, they need more adequate information and follow-up from healthcare professionals, who should be aware of the women's feelings and of their needs of information and follow-up care after treatment.
Funding
We thank the Swedish Breast Cancer Organization for their financial support of this study.
CRediT authorship contribution statement
Pranee C. Lundberg: Conceptualization, Methodology, Data collection, Data curation, Data interpretation, Visualization, Writing of the manuscript. Nitikorn Phoosuwan: Formal analysis, Writing of the manuscript.
Declaration of competing interest
The authors declare that there are no potential conflicts of interest with respect to research, authorship, financial interests or publication of this article.
Acknowledgements
We thank all participating women with breast cancer for their contributions to the study.
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Article info
Publication history
Published online: February 23, 2022
Accepted:
February 19,
2022
Received in revised form:
February 8,
2022
Received:
August 18,
2021
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© 2022 The Authors. Published by Elsevier Ltd.
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