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Ductal Carcinoma in Situ (DCIS)

Choosing not to have breast reconstruction

Some women who’d had a mastectomy chose not to have breast reconstruction. Several said they didn’t want another operation which they felt was unnecessary. One woman who had a wide local excision was also offered reconstructive surgery but declined it because she, too, felt that it would be unnecessary surgery. Other people who chose not to have breast reconstruction after a mastectomy said they were unhappy with having an implant or ‘foreign object’ in their body or using muscle from another part of the body to create a breast form. One woman said, because having reconstructive surgery would be a long operation in a hospital some distance away from her home and family, she decided against it. After seeing pictures of reconstructed breasts, another said she felt that reconstructive surgery might bring risks of further complications. Several others, though, said they would have liked to have seen other women’s reconstructed breasts before making a decision. Most surgeons have photos of reconstructions they have carried out for women to look at.

 

Gillian didn't want reconstructive surgery for several reasons. She wanted to be as strong and...

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Gillian didn't want reconstructive surgery for several reasons. She wanted to be as strong and...

Age at interview: 52
Sex: Female
Age at diagnosis: 50
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You can have reconstruction and I decided not to go for reconstruction. And my reasons for that, I’d seen what reconstruction looked like. And while others might be very happy with them and yes it does give you a breast form that’s still within your body, I wasn’t very happy about a) having a foreign part in my body. I wasn’t very keen to have a muscle cut and moved within my body. So although it would be nice to have some cleavage and to be able to wear the lower, the clothes that have lower necklines, I felt that was too big a compromise or too big … I can’t think of the word [laughs]. Just too, too big a price to pay really. I felt it was best to keep my body healthy and in as best working order as possible. My understanding which, you know I’m not a doctor, I don’t know if this is correct. But my understanding is that you possibly might need further surgery in later years. And as I’m already in my fifties I didn’t really think the surgery in my sixties or seventies, just altering something prosthetic, was worthwhile for me.
Two younger women with children said that caring for their children was their main concern. Because reconstructive surgery would involve a long operation and recovery, they would not have the time and energy they’d need to care for their children soon after coming out of hospital.
 

Jo didn't want immediate reconstruction in case she'd need chemotherapy or radiotherapy after her...

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Jo didn't want immediate reconstruction in case she'd need chemotherapy or radiotherapy after her...

Age at interview: 42
Sex: Female
Age at diagnosis: 42
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That’s my only concern' has it spread? So I didn’t really want any reconstruction until I knew that I wasn’t going to be having chemotherapy or anything like that. So I just said no. And he did paint a pretty gruesome picture so I thought I don’t think I’ll bother. And also I wasn’t fat enough for anything that he wanted to do, which was one of these stomach ones, you know they take the stomach fat. So I just left it. And then I just waited for the operation really….

 

Yeah. And you mentioned that possibly you would maybe consider reconstruction later. Is that …

 

I don’t know, I don’t know if I would. I think I was definitely against it at the time and the surgeon said, “Oh well we’ll see.” And I thought, “Well [laughs], I don’t think I will.” But actually as time goes on, you do think, maybe. For me, it’s just an issue with the children. I wouldn’t want to go into hospital again. Because I just don’t want to be away from them or worry them. Because they were very, very anxious and worried about it. Even though I really played it down very much. I wouldn’t want to do that to them so they would have to be a lot older…. And it is a major, he said to me, “Don’t do it unless you really want to.” This was the plastic surgeon. I thought, “Oh, do I really, really want to?” That’s what he said, “If you really, really want to do it, but don’t if you just sort of want to.” And I thought, actually, because it’s a major operation, it’s not like a caesarean or anything like that, it’s, not that I’ve had a caesarean.

 

You need time to recover.

 

You can’t have young kids and do it. And also if it fails, he said, it’s just horrific. I mean he was really quite blunt, which was great. Maybe I got a fuller interview because I went privately but certainly he was pretty good. He certainly scared the hell out of me. I thought [laughs], I don’t want reconstruction.
 

Not having a reconstruction was the right decision for Felicity because, after her mastectomy,...

Not having a reconstruction was the right decision for Felicity because, after her mastectomy,...

Age at interview: 43
Sex: Female
Age at diagnosis: 41
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They were very, very keen that I had reconstruction. There wasn't a kind of, I felt afterwards that there was a real emphasis on reconstruction. “You're very young, you know, you shouldn't let this change your life and we can cut this muscle and take this off your stomach”, which on top of all the other things that were happening, it's quite a daunting thought. But it was a real, there was a real, not a push but, you know, “You're very young and this is a good thing”. But in [hospital name] in fact you can have reconstruction at any point in your life. So if I'd chosen to have it when I was seventy, so long as I was in good health. And I found that very difficult because I really, I wasn't very comfortable with it at all. I felt that it was just too much surgery in one go, it was a huge thing.
 
And I had a lot of support from friends, who had spoken to other people and so, yeah, that whole thing about whether to have reconstruction or not was a very big decision, a hard decision to make. But in the end I just wanted to get the whole operation out of the way and I just opted for a mastectomy. And I think that was definitely the right decision in the end because I had to go on then to have five weeks of radiotherapy.
 
And are you comfortable with it now? I mean, do you think you might go for reconstruction at some point or is this?
 
I don't think I'll go for reconstruction. I think, I can understand why many women do and I think the body image thing is an important one but I actually, I'm not sure having, I just feel that, you know, for me to have reconstruction I'd have to have this muscle cut and possibly some surgery across my belly and I just think you'd just end up with lots more scars and the risks of major surgery and I think I'm a coward [laughs].
Several women said they were comfortable with how they looked; they didn’t want any more surgery and preferred instead to wear a prosthesis (see Prostheses).
 

Janet didn’t like the thought of reconstructive surgery. She said that, because she has a small...

Janet didn’t like the thought of reconstructive surgery. She said that, because she has a small...

Age at interview: 68
Sex: Female
Age at diagnosis: 60
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Did they offer you reconstructive surgery?
 
Yes they did. In fact the surgeon was very keen. But I just thought “oh, no way.”

 

What were your reasons?

 

[Laughs] The thought of, I think it was taking flesh from my collar bone, bringing it round and … Oh no and in the end you’d end up with a breast that wasn’t yours, but didn’t feel like a breast particularly I wouldn’t think, and the business of making a nipple. Oh! No way. I’d rather have nothing.

 

How did you feel with the prosthesis? Did you find that heavy or comfortable?

 

Yes, well this is it. I’ve still got the thing called the cumfie in today. I mean, I’m very small and I think this is why it’s been less of a trauma. Because losing one small breast and being left with one small breast isn’t such an awful thing as if you’ve got lovely big ones and one gone would be an awful lopsided effect. So all I needed is this little bit of kapok in this thing and I can go about in my normal clothes.
A few women, however, said that although they didn’t want breast reconstruction, they were unhappy with how they looked. One said she had a large, ‘unsightly’ mastectomy scar. It is important for women who are unhappy with their scar to talk to their surgeon as it may be possible for the surgeon to neaten the scar. Another said she felt ‘like a freak’ with only one breast and would like to have reconstructive surgery in the future. A few women who had used a prosthesis after surgery later went on to have breast reconstruction, sometimes because they felt unbalanced or ‘lop-sided’ with only one breast. One woman said she’d ‘had enough of hospitals’ after her mastectomy but, six months later, decided to have a reconstruction.
 

Eileen was unhappy with how her mastectomy scar looked and felt but didn’t want a reconstruction.

Eileen was unhappy with how her mastectomy scar looked and felt but didn’t want a reconstruction.

Age at interview: 62
Sex: Female
Age at diagnosis: 60
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That's a big issue for me and that's my big upset about my mastectomy, is that I'm not convinced that they needed to take so much tissue away, and it's horrible, what's been left on my chest. It's nothing to do with that I haven't got a breast, it's not that issue at all and I'm still very happy that I didn't want [reconstruction] and still don't want at the moment, I might change my mind in future but I can't imagine ever wanting to have more surgery to create an artificial breast.
 
And you said you'd got quite a big scar? How do you feel about that now?

 

I hate it.

 

As when you first saw it, or have your feelings changed over time?

 

They've got worse really, because I'm now questioning, I didn't to start with - because when I first saw it I didn't know how it was going to end up, because there was swelling, and there were tubes, and you know, and the scar was very raw. But now I know what it's like, now I know what I'm living with. And it's painful, and sensitive. It's painful in a sensitive kind of way. It's uncomfortable to touch, and it looks horrible, and it doesn't feel right. It feels tight and numb, and I can't imagine what it's like with a reconstruction, where you've got tissue that's been brought from your back or your tummy, and all the discomfort there, and foreign material inside as well. I can't imagine that that feels any better than what I've got. So I'm baffled that women find it okay.
 
But some say they do, but maybe they're much more concerned about physical appearance, than about how their body feels, and I'm not. It's the other way round for me. Of course I care about how my body looks, I don't like the way it looks. But I'm much, much more concerned about how it feels.
 

At the time of her mastectomy, Linda couldn’t face any more surgery. She said she can’t imagine...

At the time of her mastectomy, Linda couldn’t face any more surgery. She said she can’t imagine...

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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Whilst your family and your friends are so sympathetic and they come and see you, and they’re all looking at you and giving you that sad look, and, “I’m going to be okay, I’m going to be fine.” But they don’t know what it’s like. You know, you show them the scar, you show them the breast that’s gone, and, “Oh it’s not too bad is it?” Well it might not be too bad for you to look at, but for me to see everyday in the mirror, to be honest, I feel like a freak, and I’m sorry to say that, but I do.
 
So, I mean whilst I was offered this reconstruction, I just didn’t want to know because this was my fourth operation, I’d had other operations previous, in two years. And I could not go through with any more, I’d had a sickener of hospitals. So I will have a reconstruction but I shall wait until I check that the remaining breast is fine, is okay.
 
And you’re thinking about reconstruction now?

 

Yes.

 

Or you’re made a decision?

 

I will have a reconstruction for definite. I can’t live like this, but I do want to check, knowing my luck, I don’t have very good luck, so I want to make sure that the remaining breast is okay, which hopefully five years down the line it will be. I don’t feel that I’ll be too old then to have a reconstruction, and I will definitely have a reconstruction. The only thing that sort of gave me a little bit of pause for thought was my GP said, with a reconstruction, you can’t really feel for any lumps. But, I mean there were no lumps anyway. And I mean I don’t know how it’s done, and I don’t know what tissue they use, and I believe they use part of the muscle either from your stomach or your back, so hopefully that will be safe enough but yeah, no I can’t imagine my life like this permanently.
 
I mean my daughter, bless her, she did say, ‘Mum let people just accept you for what’s happened to you and who you are, you’ve not changed’, which is fair enough. But until it happens to you, you don’t know how you’re going to feel and how you’re going to react. It’s not that I wear fancy clothes or anything, but it’s a case of you can’t just go out, you have to doubly check everything’s there. And I can’t just go swimming, I used to love swimming, I’ve got to get myself a special costume, and I’ve got to get myself special bras, which yeah okay it’s a little bit of inconvenience. But to my mind, you know, it’s something that I don’t want to have to think about, plus it’s a constant reminder every time I look in the mirror that I’ve had breast cancer, you know it’s something I want to get over and get on with my life now.

 

Yeah. And you want to have a reconstruction after about five years, or before that?

 

Yes, yeah, after five years I think yeah.

 

And has it has it been easier with time, when you look at yourself in the mirror, has that changed over the time, or do you still feel the same?

 

Not really. No. No. I feel, I don’t feel right. I really don’t feel right. The scar is healing quite nicely, as they should do I suppose, but no, I just, if both breasts had have gone, and I’m thankful to God that it hasn’t, I wouldn’t bother. I really wouldn’t bother, but to have one breast and the other is just flat is, it’s very strange, it’s very strange to get used to. A lot of women do, a lot of women don’t bother, and all well and good and that’s f
 

Hilary felt lop-sided with only one large breast, which caused her some back ache. She had a DIEP...

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Hilary felt lop-sided with only one large breast, which caused her some back ache. She had a DIEP...

Age at interview: 57
Sex: Female
Age at diagnosis: 50
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I decided to have a mastectomy. And the consultant didn’t talk to me about having reconstruction at the same time. All that he said was that he didn’t work by having reconstruction at the same time. He didn’t offer me another surgeon who might have done that. And to be honest, at that stage all I wanted was to get rid of the cancer. I didn’t really think about reconstruction.
 

…The mastectomy scar healed very well. And then after about two years I started to feel a bit odd being lop-sided.

 

Did you have anything like a prosthesis?

 

Oh yeah, yeah. I had a very good prosthesis, yes. I’m very big breasted. Before the mastectomy I was sort of a 40DD and so to have one side that size and nothing the other side, and I did start to get a bit of back ache because apparently I was starting to be a bit twisted because I was compensating for the weight loss. And I did exercises for that. And I also didn’t like sitting around in just a t-shirt or nightclothes without a bra and prosthesis because it was very noticeable. And it was all right at home with my husband and the two boys. But I didn’t like it. My parents were very upset if they saw it. And likewise the boys were at the stage of bringing friends home, so I couldn’t just sort of chill out for the evening. I had to be sort of dressed all the time. It was what I wasn’t necessarily sort of used to.
 
So I started to think about having a reconstruction. And had about three different interviews where I was told initially, the first one I just you know I said, “Well you know you can take the other one off if you like because then I won’t be lopsided.” The plastic surgeon was very horrified [laughs] and said “I’m sure we can do something better than that.” Because in fact I think it’s a psychological thing, that I’d lost some of the sensation on the other side. I think it was a mental blotting out. Although there would’ve been, there’s no reason for there not to be sexual sensation. It seemed that I’d lost a lot of that.
 
And I think as well my husband was very worried about sort of hurting me or whatever. And so it seemed to lose a lot of it’s former significance really in that respect. So I think that’s where I came from sort of, you know, taking that one off if that will help sort of, you know. And I won’t feel lopsided then. And he said he could do much better. And we had several conversations. And I was offered the back flap. And I was offered then, that with the sort of saline implant. Then I was offered the DIEP flap. And I’d got, he said, I’ve a lovely big tummy, one of the few people to ever say that. But then there was plenty of fat there. And so he harvested that. I decided to go for that, even though I knew that it was going to be a much longer op than that. I felt that it would be part of me and that’s always been important. So I had the DIEP flap done two years after the mastectomy.
More experiences of choosing not to have breast reconstruction can be found on our Breast Cancer section.
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Last reviewed July 2017.

Last updated November 2011.

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