Background
Methods
Study design and participants
Participants
Data collection
Data analysis
Results
Characteristics | N |
---|---|
Age (years) (M = 41.20, SD = 6.125)
| |
Less than 30 | 1 |
31- 40 | 4 |
41- 48 | 5 |
Marital status
| |
Married | 7 |
Single | 1 |
Widow | 2 |
Having children
| |
Yes | 9 |
No | 1 |
Education
| |
Primary school | 1 |
Secondary school | 1 |
Institution (2 years after secondary school) | 4 |
University | 4 |
Work
| |
Housewives | 4 |
Working | 6 |
Time since diagnosis
| |
3- 12 months | 6 |
13–24 months | 2 |
25–36 months | 2 |
Monthly income
| |
Less than $50 | 4 |
$51- $75 | 5 |
$76- $100 | 1 |
Themes | Subthemes |
---|---|
(1) Psychological and Emotional Well-Being | • Altered self-esteem and femininity • Impact on sexual life and relationships • Psychological distress associated with mastectomy • Mirror trauma • The need for Psychological Care |
(2) Body Image and Breast Reconstruction | • The dilemma over reconstruction decision • Body image and clothing • Lack of access to prosthetic information/services: |
(3) Social and Interpersonal Factors | • Lack of marriage choices • Society’s view and stigma |
(4) Coping Mechanisms with Mastectomy Effects | • Family support • Faith in God Almighty • Comparing their situation to others • Use of prosthetics |
(5) Physical Health and Functioning | • Physical effects on mobility and function |
Theme 1: psychological and emotional well-being
Altered self-esteem and femininity
“A woman loses her femininity when she does such an operation (mastectomy), she loses her beauty from her perspective, and when she loses her beauty, she doubts her beauty in front of people”.—H
“Look, the lady really misses a feminist part from her body, I think she feels there is something missing. She loses self- confidence, specifically if she is married. Life got more exhausting; you have to take care of the issue of the breast by putting pads. It becomes like a burden and you have to attend to it”.—RA
Impact on sexual life and relationships
“For me, yes, but for him, no. I no longer want to have sexual intimacy, and I try to avoid it. I have always tried to hide the wound from him, but he says, ‘Let me see. I want to see how the wound has healed.’ He wants to tell me that he has no problem with it. He told me that as soon as I came out of surgery, while I was still under anesthesia. The first thing I asked was if he had seen me without a breast. Even when I was unconscious, I asked about this point. This shows how much this subject affects me, and I have no idea about that.” – RA.
“I was distant from my husband sexually, especially in the beginning, and praise be to God, he accepted the situation and encouraged and supported me.” – Ri
“No, not at all, thank God. My husband understands my situation, and he has never been affected by all these things. Especially when he sees me getting tired, he never forces me or tries to get close to me. Our relationship is usual, with foreplay, and our life is very normal.” – L.
Psychological distress associated with mastectomy
“But the breast loss is more distressing than hair loss, it is very painful and till now it is still painful”- RA
“It was very annoying, I can’t tell you what it can do with the female psyche, thank God”- G
Mirror trauma
“It is very ugly. Till now I sometimes find it hard to accept this and I avoid looking at myself. Even in the bathroom.”- W
“When you look at yourself in the mirror and see your feminist part is missing, you feel upset. I was crying and saying, Oh my Lord, why me”? L
“When I was passing near the mirror, I was not looking at it at all.”- W
The need for psychological care
“There should be a psychologist to support the patients both psychologically and socially”- L
“The psychologist is very helpful. For example, you can tell him things that you might not feel comfortable sharing with your doctor, husband, or anyone else in your family. He can be the keeper of your secrets. I am eagerly waiting to go to the hospital to meet the psychologist and tell him what I need. It is comforting to talk to him about the situations that have happened to you.” – A.
“To have a psychologist is a very important thing, but unfortunately, this is not followed here due to a lack of psychologists, which could adversely affect us. The patient needs a companion, and the companion should never be from the relatives. He should be a psychologist, in my opinion.” H.
Theme 2: body image and breast reconstruction
The dilemma over reconstruction decision
“Psychologically and physically, if I do the reconstruction, I may no longer feel ashamed, there are many t-shirts I can no longer wear them now because they are in open tops, I can no longer wear them if I don’t wear something higher under them, because it would look very bad. Even at the parties, I can’t wear what I want…. But the operation is very expensive, about $1000, it is impossible. It is a very big financial burden”- W
“I want $1000 to reconstruct this breast and $1000 for the second breast because I want to do evacuation and filing, means I need $2000, and this is not easy at all”- A
“No, I don’t think of doing plastic surgery because I am afraid of the side effects later on. I am afraid that it will be a reason for the disease to return again. Scientifically, I do not know if it could be a reason, but I would say that I do not have to do it, maybe if I am younger, I can think about it, but at this age I want to complete my life with my children, this is my only concern”- R.
Body image and clothing
“As for the clothes, I was feeling uncomfortable, I underwent the surgery in the winter and this helped me a lot really because I was wearing loose jackets that were hiding. I was unable to wear the bra, especially when the surgery had just been done. Once, I was gonging for a walk, I tried to wear a bra but I could not, then I put on a loose jacket. I was wondering, how would I wear the summer clothes? I think women suffer more in summer than winter. Now the wound is healing and I wear a normal bra and I put padding in it”- R.
“I am one of those people who sometimes feel upset, because I like to wear a nice shirt, but because I am a patient with breast cancer, I find difficulty to fit the bra and the fillings, so I cancel the idea and say it would not be sweet on me to wear that shirt”- D.
Lack of access to prosthetic information/services
“No, never. I have not heard about that at the hospital; we really need a lot of information. Recently, I have heard that there is a center in Latakia that provides free bras for women who have undergone mastectomy. I only heard about this one month ago, and I had no prior knowledge of this center, and I haven’t visited it yet”- R.
“Do you know that I searched throughout Damascus to find a silicone breast, and when I finally found it, it was in a larger size and without a carrier? In Latakia, I could not find it anywhere. There should be a center in each governorate, or at least in three governorates in Syria, or in two – on the coast and in Damascus. There should be two comprehensive centers to provide services for both women and men in such circumstances”- H.
Theme 3: social and interpersonal factors
Lack of marriage choices
“It is possible that I or any other woman thinking of getting marriage, but now she may not think of that anymore. Why? Because who wants to marry a sick woman, who has undergone a mastectomy and she will be in a long- term treatment, and she has become deformed in her body? I will be ashamed of exposing myself to a man. He may not accept me, and he may be angry at me at once and stigmatize me for my illness, because in our culture, this is bad for men, friends, and family”- H.
“I told my fiancé if they are going to do mastectomy, I will break up with you, I couldn’t let you see me distorted, if I cannot accept my appearance like this, how will he accept me?” W.
Society’s view and stigma
“I sometimes get denounced by outsiders that I did the mastectomy. For example, I hear comments like, it is good that your husband is still willing to touch you, or it is good that he is not disgusted by your appearance”- A.
“The only thing that made me sad was that I felt ashamed whenever I went outside of the house because anyone who knows what I have gone through would immediately focus on my chest and that makes me feel sad that my breast was removed and that I am a cancer patient. That was what I had to learn to cope with”- D.
Theme 4: coping mechanisms with mastectomy effects
Family support
“At the first shower, the whole family was waiting for me at the door…this helped me really. There was my husband, my children and my mother, and I felt they are waiting for me outside, so I know I have to be strong and this helped me a lot, this helped me a lot really. My children keep asking, do you need anything mom? They just want to know my situation inside”-R.
Faith in God Almighty
“The first shower was very difficult, but I didn’t care, I tried to help myself, I said it is something that had happened, I have to accept, and I wanted to live for my children. There are many people are suffering more and worse than this, there are people waiting to die, I mean, I kept helping myself with prayers and reading Al- Quran. This helped me a lot”- R.
Comparing their situation to others
“Now I am suffering the discomfort in my hand and I can’t work that much because of it. But I say, praise be to God, it is the left hand, because I see someone else in suffering at her right hand, so I say, it should be easier for me to handle, praise be to God”-RO.
Use of prosthetics
“I don’t know, it was very difficult, but I encouraged myself that it could be compensated by implants, at least for a while, and hopefully it will pass. I made a hand making filling, I first got a silicone breast, and even this thing is not available”- H.
Theme 5: physical health and functioning
Physical effects on mobility and function
“I was more active, there are many things I can’t do because of my hand, is it right or not? This is what is bothering me that I can’t work like before”- RI
“I need someone to help me at home. It is obligatory, I cannot do everything by myself. I find some difficult to do many things, I can do it but I feel uncomfortable”- RO
“They (the children) were very upset, sad and got busy at home a lot, because before that, I did not have to rely on them a lot, may be like 20 or 30% of the chores only I asked them to do. But now I rely on them a lot in the household chores, especially because of my hand. The children really helped me a lot”- R
“It was Ramadan. I couldn’t cook the foods they like while they were fasting. This affected me a lot psychologically, but then, thank God, now I am coming back a little by little, not fully functioning like before, but at least, a dish that they like, like sweet food something like that”- Ri