Ductal Carcinoma in Situ (DCIS)
Mastectomy for DCIS: physical and emotional recovery
At home, most women said they were careful not to lift anything heavy or over-exert themselves physically, including with housework. Some said they had a bit of pain or discomfort around their wound and under their arm to begin with, and took painkillers to ease it. Many said they had support from family until they felt able to do everything themselves again. A few said they had a visit from a district nurse.
Hilary felt a bit tired when she first came home. Her arm was stiff, though she kept exercising it. It took her about three weeks to start feeling better. Her husband helped her with the housework.
Hilary felt a bit tired when she first came home. Her arm was stiff, though she kept exercising it. It took her about three weeks to start feeling better. Her husband helped her with the housework.
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You mentioned that a district nurse was coming every day to the house?
To the house, yes, for the first week.
Yeah, once you were back home?
That’s right. Once I was back home. Because I just felt, I must admit I just felt tired and I really couldn’t understand why I felt so tired. But then I thought, “Well it’s probably the anaesthetic that I’d had.” So, well I mean I sat down a lot the first week. I didn’t really want to do much. Of course, Christmas come along as well so I was at the hospital Christmas day morning, which my son took me down. But no.
And when you came home, how did you feel physically then in terms of moving your arms and …?
My arm was very stiff. I used to do my exercises and I could sort of only raise it a little bit. But over the, and I think the massaging of my back really helped that. And because I hadn’t had anything done on the lymph gland, because I understand if they have the lymph gland done it makes things a little bit worse. So, yeah, I could just, you know, I couldn’t reach, naturally I couldn’t reach anything, couldn’t carry anything so …
So who, was anybody at home? Your, was your husband at home with you?
Yeah, my husband was with me. He drove me everywhere. And then I used to have to go and visit the doctor. And then he used to take me. Christmas Eve I tried to do a bit of Christmas shopping but after I’d walked for a little bit I’d had enough [laughs]. So, it is quite, it does sort of take your energy a little bit.
Yeah. And how long did you feel you needed to kind of rest and, you know, do your exercises at home, not take on too much?
I think it was a good sort of three weeks. Yeah, a good three weeks. I think it was about six weeks when I started driving again. I’ve got an automatic so I hadn’t got to worry too much, well, my right hand, you use the left anyway. But no, I felt happy, quite comfortable to drive after about six weeks.
Yeah. And you could do more around the house, or pretty much back to normal?
Yes, even now I’ve to be careful if I’m pushing the vacuum. If I, I know when I’ve done too much and this is when you sort of read your own body really I suppose. Again because I’d never, I’ve been so lucky in my life, I’ve been so, I’ve never had any sort of, well I haven’t had any illnesses at all. So that’s when I was, I thought to myself, “Yes, my body’s telling me to stop now.” So I used to just do a little bit, perhaps a couple of hours and then that was it then. So, you know.
Yes. And well, was there anybody here to help you with the housework or you, you know, you managed?
Yes, yeah, I managed, yes. My husband was very good, he did the vacuuming. We laughed really because Christmas Eve I was just pottering a little bit in the kitchen, Christmas day I should say. And I couldn’t cut my cauliflower because that was just using my arm [laughs] and we laughed about that. I had to shout, “Would you come and cut this cauliflower please?” [laughs] But no.
Most women noted that they recovered well, one saying she was playing sports again six weeks after surgery. A few women, though, said they had problems with their arm, such as cording, which feels like a tight cord running from the armpit to the back of the hand. It is thought to be due to hardened lymph vessels and can sometimes make it difficult to move the arm. Physiotherapy can help and sometimes antibiotics may be prescribed. The pain usually gets better gradually over a few months, but can sometimes come back.
The area around the wound is bruised and there may also be a build-up of fluid, which can make it swollen and puffy for a while. This should gradually disappear over a few weeks. Occasionally, quite a lot of fluid can build up in the area around the wound. This is known as a seroma. It may need to be drained off by a nurse or doctor. Some women who had problems with their arm after surgery had physiotherapy. Many also talked about exercising to help keep their arms mobile. Some said they exercised regularly for longer than was suggested because they were keen to look after themselves as much as they could. Several also recommended looking after the mastectomy scar by massaging it with cream.
Rachel was in hospital for four nights and, within three weeks, could do most of the housework again. She will continue with her exercises for a year and still massages her mastectomy scar.
Rachel was in hospital for four nights and, within three weeks, could do most of the housework again. She will continue with her exercises for a year and still massages her mastectomy scar.
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So I was only in from the Wednesday till the Sunday morning. So four nights. Everything seemed to go okay. I was ironing again within three weeks. And certainly within eight weeks I was gardening again. And I’ve been renovating this floor and stripped it all back. So I’m back to normal but I still do my exercises. I still finger-walk the wall because there are some days I still can’t hit my pencil mark so I think if, if I were talking to any body who was just going through it, I’d say, “keep going with them”.
I’m going to do it for twelve months. One physio said to me or the breast sister said after ten weeks “you can stop your exercises”. But I had to go back because I’d had this tendon which is, it had gone by the time I went back to hospital but it was definitely up and I’d not been able to get rid of it for weeks and weeks and when I got to hospital of course it had gone. But she said that some countries do their exercises for nine months. They don’t here. So I thought well I still massage, I still do scar massage twice a day.
On yourself?
Yes, yeah on my – I use cream and I do scar massage and I do my exercises.
Yeah, that’s good.
I try and not eat too much.
Patricia was in hospital for ten days after her mastectomy because she had a build-up of fluid under her arm. Later, she had more fluid drained at the local surgery.
Patricia was in hospital for ten days after her mastectomy because she had a build-up of fluid under her arm. Later, she had more fluid drained at the local surgery.
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No problems in the hospital. When they took the bandage off I could see the scar and everything. What I wasn’t comfortable with was the fluid build up especially under the arm. And it was quite painful, and also where the drain went in to the centre, where the nipple had been, there was quite a bit of pain there and it wasn’t pleasant.
I would say I was in hospital for ten days and the reason being that the fluid wasn’t going down enough and they weren’t prepared to let me out until the fluid had gone to a certain level, but did explain that I may have to come back again because of the fluid up.
And it was painful, what I wasn’t expecting was the pain that I really did have when they took the drain out where the nipple part was. In fact I nearly fainted with it and I thought I had a good pain threshold, it was awful. But it was done and then they took the other drain out, which was no problem at all.
And there was a little bit of fluid and everything seemed fine, and as I say I’d had all the information and I’d managed to, you know, ask the questions I thought were relevant. The fact that cancer was there and it had gone, that was all I was concerned about.
However when I did go home there was a further build up of fluid and I was very lucky that at my local GP practice there was somebody there who could take the fluid away. And it was a couple of times I’d had it done and it was painful. But as I say, as it went down I felt fine.
Maisie looked after herself before and after surgery by eating healthily. She did lots of exercise and went for a walk even if it was cold.
Maisie looked after herself before and after surgery by eating healthily. She did lots of exercise and went for a walk even if it was cold.
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I came home I had to sleep on the sofa because I couldn’t sleep upstairs in bed because I couldn’t lie down flat because of the cut and everything. So I ate all the food that you didn’t think of eating, like carrots and all of that rubbish which is good for you. And spinach I had, you know, because during the day I had spinach, carrots, leek, fish, everything in the same stuff so that my body can get. I didn’t eat any meat or anything, just fish. I ate a lot of fish and a lot of spinach and yoghurt. And noodles and stuff. I don’t think I’ll eat noodles after this. But I still have to eat it now to get my body ready for the chemo.
And I think I came out on Boxing, I think two days after that we went to get my husband, this was in the night. Because I didn’t want to see anybody, anyone you know, because I didn’t tell anyone on the street that I was ill. So we used to go walking about seven o’clock at night, this was in the winter. And I used to take my time, you were just walking up the road, just for me to get some exercise, you know. So we’d do all that for, and I came out on Christmas day, we did all that walk up and down the street, he [husband] takes me when he can, you know, because he took time off work, which is really good. His bosses allowed him to do that. And walk up and down all, oh that was, even when it was snowing and raining.
I just wanted, I just had to get out because if you don’t get out you just get into a rut, you know. And I used to get up the same time in the morning, at 7 o’clock, because that was my routine because of my work. I’d get up at seven o’clock. And I’d just get up and get on with it, it’s just what I have to do.
Many women said that, as well as recovering physically, they also had to come to terms with having had a mastectomy, several saying that the physical recovery was easier and quicker than the emotional. Everyone reacts differently to having a mastectomy. Some women said that, because their main fear was having cancer, having a mastectomy was something they accepted with a bit of time. A few woman with young children said their main concern was their children. Two younger women said that, for them, the thought of having a mastectomy was actually more difficult than living without their breast.
Jane felt that, had she been younger, having a mastectomy would have been harder. She said she could accept having a mastectomy because she was happily married and came from a medical family.
Jane felt that, had she been younger, having a mastectomy would have been harder. She said she could accept having a mastectomy because she was happily married and came from a medical family.
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I’ve thought since, I know that some people I’ve talked to have been fairly surprised that I was so matter of fact about having a mastectomy. And I think that’s due to two things really. I think it’s due to the fact that I come from a slightly medical family so it didn't frighten me as a procedure. And also because I’m in my fifties and happily married and I’m not, you know, a twenty-nine year old looking for a boyfriend or anything like that. And if I’d been twenty-five and I probably would’ve been a lot more worried and a lot more concerned about how I was going to look afterwards and so on. So those would be big issues. They just weren’t particularly for me.
For Felicity, the time before the mastectomy was harder than having the operation. Later, she was glad she had a mastectomy because she'd had widespread DCIS and needed radiotherapy.
For Felicity, the time before the mastectomy was harder than having the operation. Later, she was glad she had a mastectomy because she'd had widespread DCIS and needed radiotherapy.
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I think the time before the mastectomy was much harder than the actual reality because again I had really good care and I was in hospital for five or six days in [hospital name]. There were no complications and the nurses there were fantastic. I had my own room and I was very, very well looked after. So that was really good.
And I think the worry about it was much bigger. It was hard to think afterwards, the whole body image thing but I've got two small children as well. So you just have to get on with it.
So I was at home after that. I'm just trying to remember, piece it together. And when I went back again, my whole breast had been completely wall to wall covered with DCIS. And I'd obviously made the right decision then to have that mastectomy. I was very lucky that it didn't go into my lymph nodes. They did remove some of my lymph nodes but it hadn't gone through so they only removed two or three. So I was very, very lucky but because it had gone right to my chest cavity, my wall, my muscle, I had to go and see the oncologist and get radiotherapy.
For many women, though, losing a breast was very emotional and difficult, and they talked about the different feelings they had after surgery and over time. Some women felt that losing their breast was like a bereavement and they had many different feelings, including anger and sadness. Several said they felt anxious and depressed afterwards and counselling or joining a breast cancer support group had helped. Many said they would have liked to talk to other women with DCIS (see Support from other women with DCIS or breast cancer).
With hindsight, a few women said they found it difficult to accept they’d had a mastectomy and they wondered if it had really been necessary for a precancerous condition.
After having a mastectomy, Rachel wondered whether it had really been necessary. She would have liked more time before surgery to think about it.
After having a mastectomy, Rachel wondered whether it had really been necessary. She would have liked more time before surgery to think about it.
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Having read the information what what were your feelings?
I can still go back into it. I try not to think about that because you’ve got to tell yourself that they’re spending at least two grand on an operation, they wouldn’t spend it [laughs] if it wasn’t necessary so it’s just the way my, I’ve taken it on board.
Yeah. Yours was high-grade wasn’t it, so does that help you feel?
Yes it does help me feel that it was a bit more justified, I also, and I’m not quite sure how I’m going to do it, whether I’ll wait until I see the surgeon with the notes, but I want to know about those five samples and what they found on the biopsy. I didn’t know what to ask at the time, I mean we were just, I think we just because, when you’re suddenly faced with an operation, that sort of question doesn’t really enter your head.
Have you felt that the more information you’ve read the more you want to ask questions and the more questions you have?
I haven’t got, I think questions have been answered by the information I’ve gathered. I wished I’d have known some of it before hand that’s for sure.
If you’d known some of this before hand what might, is there things you would have done differently?
I might have waited, whether I could have persuaded my husband or not I don’t know but I might just have waited that bit longer. I’m not so sure that they know enough about it, and I, especially since the lady that was sixty two that had, she was scheduled for her op an hour after me, she had to go back down to the breast care unit, to have her little piece pinpointed by wire to localise it. Something tells me that there’s something wrong when they’re doing it, they will have done a, they will have checked that out. What if it was nothing, I just think that maybe they’re being a bit over, over-doing it a bit. ‘Cause you’re certainly becoming a statistic.
It’s more I’d like to know the, it’s the biopsy one I think really now, and just to get the results after surgery, just to make sure I’ve got that written down correctly. And maybe know whether or not, I think I know that they’ve done the right thing, I think I know that they’ve done the right thing. I think it’s just me that feels that the operation might have, I just thought it was unnecessary. It felt like they were using a sledgehammer to crack a nut. That’s how it felt really.
When you got home, I mean, all that time you were dealing with the physical side because there was no real time to think very much was there, when did you really start thinking about the emotional side?
When I got home...
Yeah.
When I got home...
Yeah.
Yeah.
What kind of things were important, were you know, mattered?
Well, ‘was this a sledgehammer to crack a nut?’ I wrote a few things down [flicking through papers] this is what I said to Eileen [DCIS Information Project founder], she very kindly sent me a copy back, ‘cause I didn’t think it would come to anything so I’d written it again. I thought you might like to take it with you. But yeah it was just really, just I think it just happened so quickly. I looked in my diary this morning, but I didn’t- wasn’t putting nought in there it was
For a few women, their experience of having a mastectomy was greatly influenced by their perception of the care they had received in hospital. While most were happy with the care from doctors and nurses, some felt that staff could have been more compassionate. One woman sought a second opinion because she felt dissatisfied with a consultation with her surgeon, which she felt had been rushed and hadn’t give her the information she needed. A few said they had been made to feel like ‘a piece of meat’ rather than a person and felt that their care could have been more sensitive.
Jacqui was very happy with the care she got from her surgeon, but felt the anaesthetist could have been more sensitive.
Jacqui was very happy with the care she got from her surgeon, but felt the anaesthetist could have been more sensitive.
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My experience in the, when I actually went down to theatre, that wasn’t a very nice experience either. When I went for the anaesthetic, the anaesthetist didn’t treat me very, well he, I felt as if I was a piece of meat to be honest. He said “which one is it” and “we’ve got to put a cross, put a mark on it” which I realise they have to do to make sure they’ve got the right one. But unfortunately I was left with that, a nurse should have been with me right the way through, but I was left with two men. I was made, as I say, just to feel like a piece of meat and that, since, has given me a terrible fear of having to go through any operation since that experience. I wasn’t treated very good by the anaesthetist, but as regards the consultant, I think he’s brilliant, you know. A lot find him harsh, but he’s straight to the point and doesn’t pull any punches and that’s what I like. I would rather know than not know, cover things up, you know.
Last reviewed July 2017.
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