Ductal Carcinoma in Situ (DCIS)

Wide local excision for DCIS: the operation

Most women had surgery shortly after diagnosis. For many, this was the first time they’d had any kind of surgery. Several felt anxious beforehand and found it difficult to sleep, especially the night before. Some said they took extra care of themselves before surgery, eating healthily and exercising in order to be as fit as they could be beforehand. A few women said they prepared themselves psychologically and emotionally by using complementary approaches, including meditation and Neuro-Linguistic Programming.

Before surgery, Carol stopped drinking, cut down on smoking, ate healthily and walked several miles a day.

Before surgery, Carol stopped drinking, cut down on smoking, ate healthily and walked several miles a day.

Age at interview: 51
Sex: Female
Age at diagnosis: 51
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As soon as I knew I’d got to go into hospital for an operation, I stopped drinking alcohol completely. I stopped smoking and I started eating loads and loads of fruit and vegetables.

 

How soon before surgery was this? Or as soon as you were diagnosed?

 

I think it was as soon as I went back for the second mammogram actually. Because I knew there was something wrong and I just thought take care of yourself. Be as fit as you possibly can be, you know, before you go into hospital, just be fit.

 

Before you had the surgery you stopped drinking completely.

 

Completely.

 

Stopped smoking completely?

 

Not completely, but I cut down. Absolutely, and about three days before I actually went into surgery, I stopped completely. Because of the anaesthetic and stuff, so I did stop completely then. I didn't smoke for a fortnight after the operation either. And whereas I would walk maybe two miles a day with the dogs, I was walking like three or four miles everyday, just to get my fitness up.

 

Yeah. Did you notice changes then in your.

 

Yes, I think it does you good mentally really. Not only physically because you're getting the exercise but I think exercise is good for you mentally. And I think that’s why I was as calm as I was. Basically because I was doing all the right things. I couldn't have done more than I did for myself to get fit. And of course I've maintained that since, you know. I do have a drink now but I don't drink to excess. I do smoke but I don't smoke to excess. I walk three or four miles every day. And obviously I’m a carer for my mother, so there's a lot goes into that physically as well. And I just intend to keep fit.
Some women said they were worried about having a general anaesthetic. One was anxious about waking up during surgery. Another, who lived alone, wondered whether she’d be able to cope alone at home after having had anaesthetic. One woman, who’d had problems with general anaesthetic before, said she was worried she’d have problems again. Very few women actually do have any serious problems and only one woman we spoke with said she had worrying side effects afterwards

Sandy stayed with a friend after surgery, and that turned out to be just what she needed.

Sandy stayed with a friend after surgery, and that turned out to be just what she needed.

Age at interview: 58
Sex: Female
Age at diagnosis: 58
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When I went into hospital for the first operation, I needed support. I live on my own. And I thought, “Oh, a general anaesthetic, what’s going to happen when I come out? How am I, you know, am I going to be move? Am I going to be tired?” And my friend insisted that I stayed with her for a couple or three days. Which was just what I needed, she did everything for me. I couldn’t have come home on my own.

Elizabeth, a nurse, said it was only when she developed painful symptoms that she found out she'd woken up during the anaesthetic, but wasn't worried or angry.

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Elizabeth, a nurse, said it was only when she developed painful symptoms that she found out she'd woken up during the anaesthetic, but wasn't worried or angry.

Age at interview: 50
Sex: Female
Age at diagnosis: 49
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I was sitting waiting with the wire stuck in, yeah, sort of…. But it wasn't unpleasant. I was just worried about waking up and ironic she said we wake everyone up, but then I didn't, I woke up before I was due to wake up.

How did that feel, waking up? Did you knew where you were?

Well I had no idea of what happened to be quite honest. And I think that sometimes you never know what happens in surgery. Because I'm sure if I hadn't developed any symptoms, nobody would have been the wiser. What had happened was, twenty-four hours following the surgery, my jaw became very swollen. I could hardly swallow, my ears were very painful. I remember walking in the rain to get to the GP because I wanted to see him urgently. It was almost closing time and he said, “Are you all right?” And I said, “No, I've got this awful ear, pain in my ear, my throat feels as though I'm not going to be able to swallow.” And he said, “Well”, and I said, “Well I've had some surgery done yesterday and I don't know what happened.”
 
And he rang [the hospital] while I was sitting in the surgery and they wanted to see me straight away. But I couldn't have the energy or the strength to come all the way back here because I live in [Kent]. And so the following day I did come back to see them and I brought my carers with me, the lady I call my mum who looks after me. And they told me that during the surgery I woke up before they had finished and because they had to relax my muscles to get me on, you know, to put me to sleep so quickly, this particular drug is the side effects of, still I think the tube they put down must have sort of damaged the side of my throat leading up to my ear. It was so fast, it was so quick, you needed to apologise for that but I wouldn't have known had I not developed, you know, got the symptoms because they don't always tell you everything.
But they did apologise and I think he was just trying to do the best for me. And I think the reason I woke up was because also he was taking x-rays each time he removed whatever. He was bringing the machine in and that takes time to bring the machine to take the x-rays and perhaps I just woke up, you know. So, but I wasn't angry.

A doctor explains why most women have no need to worry about general anaesthetic.

A doctor explains why most women have no need to worry about general anaesthetic.

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Yes. And a lot of woman said before having surgery, often it was the very first time that they’d had surgery and they were worried about having a general anaesthetic for various reasons. Is there anything that you could say to reassure women who are worried the day before surgery, or leading up to surgery, about anaesthetic?
 
Well general anaesthetic where patients go to sleep to have their surgery is extremely safe. And it’s extremely safe particularly in this patient group who are having what is called elective surgery. They’ve got a problem and it’s planned that they’re having an operation for it. And therefore they’re usually assessed beforehand to know that they’re in medically good condition to have their surgery. And the number of times that a patient has problems with general anaesthetic that is severe in that kind of situation are extremely small. I think statisticians have worked out that the risk, that the drive to the hospital often may be greater than the general anaesthetic that you’re having.
 
So the anaesthetic sometimes can be different for patients who have come in as an emergency, after a road traffic accident or when they’re ill for other reasons, which is very different from the lady coming in to have a breast operation. So we wouldn’t see, year on year, any instant of a severe problem after a general anaesthetic for a breast patient.

 

Yes. Can there be smaller kind of reactions, like some of the women said they woke up shaking or shivering a bit, or vomiting.
 
Yes, I think that those types of things can happen. A lot of ladies often had experience in the past of having had an operation for some other reason, and the anxiety as well before the operation sometimes means they’re a bit nauseated afterwards, ‘cos all of us as humans are complex individuals, so rather than it just being the drugs, it can be the mental state or the emotional state which affects everything. But, by and large, most patients tend to find things very straightforward and as a reflection of, like more and more these days people go home the same day.
 
After a wide local excision?
 
Yes. Yes, and occasionally in some parts after a mastectomy with drains in perhaps. But they recover very quickly. They’re usually able to meet their loved ones later on that day and they’re feeling relieved that everything’s alright.

At the hospital
 
Most women said they took a friend, partner or family member, such as a daughter, with them to the hospital. At the hospital, they had a procedure called ‘localisation’, either the day before surgery or on the day of surgery itself, before the operation. Because DCIS can’t be felt, localisation is used to pinpoint the exact area to be removed. A fine wire is inserted into the breast under local anaesthetic using either mammography or ultrasound to make sure that the wire is accurately positioned where the microcalcification is in the breast. This usually takes about half an hour and should not be any more uncomfortable than having a mammogram. Once the wire is in place, it is covered with a comfortable padded dressing and left there until surgery.
 
Many women talked about their experiences of localisation. A few found the procedure painful, uncomfortable or unpleasant. Several said that they felt anxious afterwards because they had to wait in the hospital for several hours before surgery with a wire in their breast. Having not eaten or drunk anything all day, they were glad to be finally taken to theatre. One woman said that the procedure took longer than expected because the machine broke down, another that several attempts were made to get the wire in place. Some said they would have liked more information beforehand about what would happen in hospital, including information about localisation.

After localisation, Jane waited over an hour to have surgery. She was on her own in a private room and felt a bit anxious.

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After localisation, Jane waited over an hour to have surgery. She was on her own in a private room and felt a bit anxious.

Age at interview: 50
Sex: Female
Age at diagnosis: 49
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I had to have the needle put in to point to where it was and then keep that in until the operation because it was so small. And there was no lump as such. So I had to go on down and have that. That wasn't ooh. That wasn’t very pleasant because when, I was under the impression that when I went down to the x-ray to have the needle put in then I'd go straight, I thought that it wouldn't be long and I'd be straight into the. So my husband went home, came home then. But of course I had to sit in this sort of the x-ray area waiting for that to be done.
 

And they get you to sign, if you're private patient forms and put your numbers on everything. And I remember thinking, “Oh I don't want to be doing this at the moment.” Because I was a bit shaky. So they did and they put the needle in. And then took me back. And then there was about probably an hour, hour and a half wait before I was taken down. And I was on my own, so that was a bit, I didn't like that very much. It was a bit scary.

 

Yeah. Just waiting, nobody else came?

 

Just waiting. No. And of course lovely to have your own room. But…. So if I had been in the main ward I would’ve had someone next to me and I would’ve chatted. But, of course, because I was in the room on my own, the door was open but still nobody comes into your room. And I didn’t feel, because I’d had this cuff thing on, I was not the type of person that I could just go and sit next to somebody and chat. It probably would’ve been a good idea to have done that really.

Waiting to have surgery made Agnes even more anxious and she had a headache. She would have liked more information beforehand about what would happen at the hospital.

Waiting to have surgery made Agnes even more anxious and she had a headache. She would have liked more information beforehand about what would happen at the hospital.

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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I wasn’t happy about the fact that we spent practically sitting four hours doing nothing. I was told prior to the operation date that I’m going to be meeting somebody from the surgical team. I’m going to have a meeting with the anaesthe, no I can’t say that [laughs].

 

Anaesthetist?

 

Yes, thank you, anaesthetist. That happened in about three minutes flat, the two of them. The rest of the time it was sitting around and getting more and more worked up about the fact that this is all badly managed. And finally to find that my operation won’t be until twelve o’clock midday.
 
I felt that they just put me in a situation where I’ll get more and more wound up about the whole thing. Instead of giving me enough information of why this was happening this way, I felt that I’m just being put on a conveyor belt. Because they work there, they know everything, how it’s going to happen. For them it’s just another routine day. But for me it’s, to some extent a life changing date because I’m going to lose something. It’s not that I don’t want to lose that lump because I do, thank you very much. But I felt to some extent like I’m sitting in a old people’s home, when every chair looks different and equally uncomfortable. You’re just treated as a thing or a number rather than a person.
 
I also had, a wire guided procedure. I had to have another mammogram just before the operation, they insert a tiny, very fine wire into where the trouble is. So that the surgeon would know how far to go and how much to cut around it. That thing was fabulous. It was a team of three ladies and a male doctor. They were just so focussed about you in the middle and they’re doing things to you. They explained everything. They done utmost to make comfortable as much as possible. It’s like a different planet altogether. It’s really in the same hospital. So what they can do on the ground floor level, up on the first floor, is way, way different.
 
What else comes to mind? I had a headache at the time already going on. It was a kind of, just a tension headache.

 

While you were waiting?

 

While we were waiting in hospital in the morning. I asked for a pill and even that couldn’t be given, just two paracetamols, without somebody signing for it. So I thought next time I will take my own stuff before I go in, if there’s going to be a next time. By the time I actually had my wire inserted and was all taped up and ready to go, things started to move very quickly. And within about ten minutes from coming back from this wire thing insertion place, I was put on one of these trolley things. And pushed into a sort of pre-op place where, again, I started to feel like I’m just really like a lump of lard here. Different people came in from all sorts of directions. They didn’t really explain what’s going to happen. The person who inserted the needle had trouble finding the vein. So she poked about which wasn’t very nice, just when you’re already shaking with nerves.

Hilary hadn't known anything about localisation beforehand and found it painful.

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Hilary hadn't known anything about localisation beforehand and found it painful.

Age at interview: 57
Sex: Female
Age at diagnosis: 50
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One of the things that I was going to mention was the wide local excision preparation, which I hadn’t anticipated being as painful really as it turned out to be. I was told that they were going to pass a wire through the breast in order to identify where to cut tissue from and they needed a wire there to sort of triangulate, to be able to remove the tissue because once you’re lying flat and there’s no point of reference. If there were no points of reference, they wouldn’t know what to take out. And you haven’t got a lump or anything. But that was quite painful that. They use something similar to the plates for a mammogram, and they squash the breast so that this, like a criss-cross of plastic coordinates, the grid. And then they take a sample from each of those, similar to the ones they took initially to diagnosis it. And then pass the wire through. And they do give you a local anaesthetic. But it doesn’t, the overall discomfort was there and a little bit of pain. But not to the point where you want then to sort of say that they couldn’t carry on. But it was very uncomfortable. And I hadn’t anticipated that.

Yeah. That was just before you went for the operation?

That was the morning before. Hmm. So they put a wire in and they leave the wire hanging out each side, which was strange anyway, you know. And I think that that was sort of part of the start of me feeling that the breast actually wasn’t so much mine anymore. There was something being done to it. And I think they described it as physical discomfort. But I thought it was quite painful, that. And, you know, with all the other procedures I’ve had and I had a general anaesthetic. But sort of the discomfort afterwards isn’t usually such an acute pain as that was. And I didn’t feel that I’d been told how uncomfortable it was going to be. It was a bit more like a visit to the dentist really. You know you’re [laughs], they only tell you half.

Most women had localisation in the same hospital as their surgery, though two people said they had localisation in one hospital and surgery in another.

Sue felt fine on the day of surgery and was taken by ambulance from the local clinic to the hospital.

Sue felt fine on the day of surgery and was taken by ambulance from the local clinic to the hospital.

Age at interview: 50
Sex: Female
Age at diagnosis: 49
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I was given a date for the surgery in November. Perhaps the night before the surgery was very worrying, like having any surgery is. But they were just absolutely brilliant. I went to the clinic because our clinic in [place name] is not in the same hospital as where you have the operation. We have a separate breast cancer clinic. I went to the clinic first and had several mammograms done to make, find out where the actual DCIS was because it doesn’t show up. And they needed to put this fine wire in to show the doctor when he came to do the operation exactly where the DCIS was that needed removing.

 

Yeah. And you, on the day of the operation, how did you feel on the actual day, can you remember exactly what happened on that day?

 

I felt really good on the day of the operation. I don’t know why but I had the wire put in at the local clinic in [place name]. And then I went by private ambulance to the hospital. And I just sat around at hospital reading magazines and talking to another lady who’d had a similar operation. And everything went really, really quickly.

Sandy had to arrange her own transport from one hospital to another. She said waiting to have surgery was the longest four hours of her life.

Sandy had to arrange her own transport from one hospital to another. She said waiting to have surgery was the longest four hours of her life.

Age at interview: 58
Sex: Female
Age at diagnosis: 58
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It was actually quite horrendous because I was told that I would have to have a wire inserted into the breast, that in order to do that I had to go to [hospital name], which is a forty-five minute drive away. Have the wire inserted at half past eight in the morning. And then get back to [another hospital] to have the operation. And I asked, “Well who takes me, do I have an ambulance or?” “No you get there yourself.” So my friend drove me. I had the wire inserted and they drove me back to [the second hospital]. Got back to [the second hospital] about half past ten. And sat in a waiting room until half past two, with a wire inserted in my breast. And not feeling at all well. So that is a very negative side. It may only be in this area, this part of the country that happens. But to expect someone to travel to [hospital name], have a wire inserted. Another forty-five minute trip back to the hospital and then wait four hours in a waiting room with a wire in your breast, not good.
 
So I was pretty annoyed and very uncomfortable. Don’t get me wrong, the wire didn’t hurt. I couldn’t feel it. But very aware that it was there. And ooh could I pull it out? Or, you know, I just had a little sort of cardigan on, could I rip it out? And ooh that was horrible.

 

Yeah. So you just sat and waited in the waiting room, was your friend with you?

 

She was with me the whole time. And of course I hadn’t been allowed to drink or eat since the previous evening. So she didn’t feel that she could go and get herself a drink because I was gasping by then. The anaesthetist came and said he needed to talk to me. He took me to a side room, which was a storeroom. And he had a consultation with me. Then the surgeon came and took me back to that same room. And then I was back in the waiting room. And that was just the longest four hours of my life. I just wanted it over and done with.

After coming round, although some women said they felt very tired and groggy because of the anaesthetic, most felt well. Only a few were sick and one woman who reacted badly to the anaesthetic said she felt dizzy and disorientated. Another said she had a severe reaction to the drugs she’d been given only after she got home.

Agnes would have liked to know beforehand that shaking and shivering were possible reactions to anaesthetic.

Agnes would have liked to know beforehand that shaking and shivering were possible reactions to anaesthetic.

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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When I came round after the operation, the first memory I have is having the shakes really, really bad, trembling, kind of uncontrollable trembling. Nobody said this is a sort of an after effect of being put to sleep. I thought, why can’t they be bothered to say before you go to theatre, ‘By the way, when you come round you’re going to have shaking limbs and shaking everything. And you’re going feel very, very cold and this is perfectly normal. This is a side effect or an after effect of the stuff we put in you.’
 
So that was about one o’clock. All this shaking that I’m now having is just the nerves of talking about it. It lasted for about forty minutes at the time I think. I still had the headache. I was given more painkillers that didn’t work. So basically until five o’clock, I was having this headache and really weird sensation of coming round from the operation. Sometime in the afternoon my husband appeared and then he’s gone home to look after the children.

Carol was desperate to go home where she could sleep properly. She had vomited because of the anaesthetic and felt weak.

Carol was desperate to go home where she could sleep properly. She had vomited because of the anaesthetic and felt weak.

Age at interview: 51
Sex: Female
Age at diagnosis: 51
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Once I'd come round after the surgery I was extremely dizzy and disorientated. And I could see other people that had had surgery that day and they were sitting up in bed and drinking tea and eating toast. And I just felt awful. And I'd actually got an oxygen mask on and I was not with it at all. And nurses kept coming and checking on me and taking my temperature and doing this, that and the other. And I could see, people keep coming around with tea trolleys and I just couldn't physically do that. And once I had sat up, I tried to walk to the loo and I was all over the place. And when I came back, that's when I started to be really physically sick. I was very bilious and they gave me some tablets to control it. I’d mentioned beforehand that I'd had a general anaesthetic twenty years previously for some dentistry and I'd had a bad reaction to that. And they said, “That's OK, we'll give you a lot of anti sickness stuff in with the anaesthetic.” So I thought I was going to be OK, but I wasn't. I had the same violent reaction to it.
 
They gave me tablets to control the sickness, they didn't work. They gave me a little pill that you put under your tongue to control it, that didn't work. And in the end, this one particular nurse, bless her, made it her mission of the day to stop me being sick. And she actually gave me intravenous drugs. And I told them that I wanted to go home because I'd had such a poor night the night before and there was an old lady that was moaning all night. She was in the wrong ward. And it wasn't her fault, and I felt sorry for her but I just couldn't rest. And I said, “I’d like to go home as soon as possible”, because originally this WLE had been planned for day surgery. So I'd got it into my head that I would be home the same night. And then they changed it and put me on an admission ward instead. And I really didn't want to stay. I’d had to stay in the one night, obviously because I didn't have the operation until actually four o'clock in the afternoon, and I wasn't fit to go home that night. I wasn't with it, I was still under the influence of the anaesthetic and had a really bad night, as I say.
 
And the following day I was still being ill [laughs] and they gave me these intravenous drugs and they said, “If you can…”, this was later on in the afternoon that day, I kept saying, “I want to go home, I can't spend another night in here and not sleep at all again.” I was physically exhausted. Obviously I’d had nothing to eat or drink then since goodness knows when, so I was beginning to feel quite weak.
 
And they said, “If you can take a drink and keep some food down, we'll consider it.” So I was sipping away at this water and I ate two Nice biscuits, which a nurse went and fetched me. I was just hoping and praying that, you know, I could keep those down. And then in the end they still didn't want me to go home. They still wanted me to stay another night for observation because of the bad reaction. But I was having none of it and I just, I rang my partner up and said, "Come and fetch me."
 
The surgeon had been round and he’d said he’d got no problem with me going home. As far as the operation was concerned everything was fine. He’d checked my wound and everything. But the nurses were concerned about the reaction to the anaesthetic. And apparently my oxygen levels had dropped low or something. This is why I’d got the mask on. But anyway, I did come home.

 

So you came home and were you OK at home or you were still sick?

 

No, no, I’d stopped being sick. The intravenous drugs did the trick. And I wasn't sick again after. Even the car journey home, I was pretty doubtful about that but [laugh

Most women said that, although they were attached to drains at first and needed to take care when moving, they were in no pain at all after coming round, several saying they had very little need for painkillers.

Sue was discharged from hospital a few hours after surgery and had no pain at all. She was back at work a few days later.

Sue was discharged from hospital a few hours after surgery and had no pain at all. She was back at work a few days later.

Age at interview: 50
Sex: Female
Age at diagnosis: 49
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I only waited about another three weeks for my appointment to go to the hospital. On the day of the appointment, I had to go to our local breast clinic to have a wire put in to ascertain exactly where the DCIS was for them to cut out. Because there wasn’t a lump or anything, in surgery they couldn’t see exactly where they would need to cut out. This involved again having a mammogram and the wires put in. I was very late leaving the hospital so I was late arriving at the other hospital.
 
So I was the last person seen to go down for my operation about half past three in the afternoon. But by half past eight at night I was on my way home. And I was in no pain at all. They had told me to stock up on these different painkillers, etcetera, etcetera. But I didn’t need anything. And I never did need to take any painkillers.

 

Yes, my breast was black and blue and very, very swollen. But all I had was this very small scar completely around the nipple, where the operation had taken place.
 
I went back and saw the consultant a week later and they took out the last couple of stitches. And I was back at work within a week. And I haven’t had any problems since. I’m now on a yearly mammogram screening just to make sure nothing comes back in the future.
Some women were on a ward with breast cancer patients, while others were in a mixed ward with men and women who’d had various kinds of surgery. Several said they found the ward noisy, so sleep and rest were often difficult. A few women who had private health care had their own room. One of these women, though, said she asked to have a bed on the ward after surgery because she preferred the company of other patients.

Agnes had very little pain after surgery but was unhappy on the ward. She found it noisy and felt it could have been better set up.

Agnes had very little pain after surgery but was unhappy on the ward. She found it noisy and felt it could have been better set up.

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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Out of the other three ladies who already had their operation that day, one of them was really knocked out. I think she had a mastectomy. She reacted very badly to the after effects of the operation. In the other corner there was a lady who had dementia and was talking to herself all the time and making sort of really unpleasant remarks to my husband and me. And every time I asked the nurses to keep the curtains shut, if there’s a new shift of nursing they’d just open it again.
 
It was a very unhappy experience really. I couldn’t go to sleep. The following morning by about six o’clock, everybody was awake. The lady with the dementia was making a lot of noise because she wasn’t given a call button for the nurse because otherwise she obviously would’ve spent all her life pushing the button, with her needs. And she made noises with different, whatever she could reach from her bed. Banging on the window and bedside table. And I think I decided there and then I want to get out of here as soon as possible.

 

How did your breast feel at that time, did you have any pain or …?

 

I didn’t have much pain, no, no. It wasn’t so much discomfort of the breast wound, as just being very tired and unhappy really. I feel very strongly about the fact that I could not have a sleeping pill for six to eight hours. I cannot believe that a doctor could sign for it who never met me in my life. And nobody else in the whole hospital was able to sign for a sleeping pill?
Because a WLE is a relatively short operation, most women were discharged from hospital either on the same or following day.

Last reviewed July 2017.

Last updated November 2011.

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