Radiotherapy for DCIS

Radiotherapy treats cancer by using high energy rays to destroy the cancer cells, while doing as little harm as possible to normal cells. Treatment is usually given daily for several weeks as an out-patient. It is often used after surgery for breast cancer, though may occasionally be used before or instead of surgery. More medical information about radiotherapy can be found on Macmillan Cancer Support’s website.
After a wide local excision, radiotherapy is sometimes given to the remaining breast tissue to reduce the risk of the cancer coming back in that area. After a mastectomy, radiotherapy to the chest wall may be given if the doctor thinks there is a risk that any cancer cells have been left behind. Some women with DCIS have radiotherapy after surgery, but it depends on the grade of DCIS and the type of surgery given.

A doctor explains why some women with DCIS are given radiotherapy.

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Some women also wanted to know why some women with DCIS have radiotherapy and others don’t.

Good question. And the basis of treatment with DCIS is to try and achieve complete excision, complete removal by surgery. Now the use of extra treatments such as radiotherapy or other anti hormonal tablet treatment has varied greatly amongst various clinicians, because it’s a little bit uncertain where the role of those other treatments lies. And it also is to do with the fact that not all of the DCIS will be the same. And to expand on that a little bit more, if you had a mastectomy, removal of all the breast and the nipple for DCIS, it would be really, really unusual that any radiotherapy would be needed afterwards.

But if you’re having just a piece removed of the breast for a normal invasive breast cancer, you would always have radiotherapy to the rest of the breast afterwards. With DCIS, what it can do is to try and recur in the same breast, often in the same area, and studies have said if you had radiotherapy it makes it a bit less likely to come back in that breast than if you didn’t have radiotherapy. All that’s going to happen is the DCIS or a form of cancer might come back in that breast and you reduce the chance with radiotherapy. But there’s divided opinion about whether the radiotherapy is giving you real benefit or not. Because for most people, if it has been fully removed, then it won’t recur. So there is ongoing debate and the role of radiotherapy has probably become a bit more clarified in recent years, and I would think now it is more common for the, if you like, the more difficult types of DCIS, the higher grade, most people would now get radiotherapy. For those that are not higher grade, they probably, most would still not get radiotherapy.

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Radiotherapy is normally given in the hospital radiotherapy department as a series of short daily sessions. The treatments are usually given from Monday to Friday, with a rest at the weekend, and may last from 3-6 weeks. Each treatment takes 10-15 minutes and is usually given as an outpatient.

Jean had six weeks of radiotherapy, five days a week, and met some lovely people at the hospital.

Age at interview 61

Gender Female

Age at diagnosis 59

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I went on to radiotherapy in November. So that was six weeks. Five days a week [laughs].

Five days a week?

Aha.

Travelling to the

To [hospital name], which is about half an hour away. Cancer Care, they came picked you up every day and it was a driver in a car which was very, very good and, you know, everybody as I say could not be nicer. And even all the treatment and everything, you met, I met a lot of lovely people all through it, you know. That was the thing and you’re on the same sort boat you know. So it was easy to deal with.

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To ensure maximum benefit from radiotherapy, it has to be carefully planned. This is done using a CT scanner, which takes x-rays of the area to be treated. Treatment planning is a very important part of radiotherapy and it may take a few visits before the clinical oncologist (the doctor who plans and supervises the treatment) is satisfied with the result. Marks are usually drawn on the skin to help the radiographer (who gives the treatment) to position a person accurately and to show where the rays will be directed. These marks must stay throughout the treatment, and permanent marks (like tattoos) may be used. These are tiny, though some people feel a little discomfort while it is being done.

Pam was very concerned about the tattoo-like marks that would be drawn on her skin before…

Age at interview 55

Gender Female

Age at diagnosis 53

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I started reading on radiotherapy and found out even more about how the breast can shrink. And the tattooing. And that was another aspect of it that upset me because I don’t, I mean some people have tattoos for decorative purposes and they like them. I haven’t got any. I’ve never wanted any. And I didn’t know at that point, I honestly had this idea that I was going to look like, you know, those join up the dots puzzles for children, where you join up all the little dots. I’m going to look like that. You know. And again, it’s silly because, you know, it’s your life, it’s your health and I’m thinking of all the cosmetic side of it. And I thought, I don’t want all these dots on me. I just don’t want them And I was trying to find out how many dots there would be. I remember asking the GP. I said, you know, What will these dots be like And he said, it’s a tiny little dot of ink. And I said, Because, you know, I’m not happy, I don’t want them. Is there any alternative And he said, They use a clean needl, he said, don’t worry That’s all he was interested in.

I asked him [doctor] about the hardening, the shrinkage. And he said pretty much the same thing, We don’t know how it’s going to turn out. It can happen I even questioned the nurse that was with him. I said, You see ladies whove, before and after radiotherapy, you know, what do you think, as a woman, tell me what you think, does it look acceptable, does it look awful And she said, Well, it varies But she said, I would say it’s acceptable. And given that, you know, we’re trying to save you getting something far worse she said, Ye, because I wanted to talk to another woman. He was male.

And she said, So, ye, she said, if it was me I would have it done But I was sort of teetering on the brink, what to do about this radiotherapy because on the one hand I knew I probably needed it or they wouldn’t be recommending it. But I didn’t want this shrinkage, I didn’t want the hardening. I didn’t want the tattoos.

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Sandy describes what happened when she had planning for radiotherapy and then the treatment…

Age at interview 58

Gender Female

Age at diagnosis 58

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Well it starts off with your treatment planning. And you’re put on a machine which is a simulator. it’s the same sort of machine that you’ll go on when you have your radiotherapy but it doesn’t actually do anything. And you lie there and they take measurements of you and they give you little tattoos as to where they’ve got to direct the radiotherapy. they’re pinprick tattoos, very difficult to see.

Then when you go for your radiotherapy, it takes a minute. The longest part is taking your clothes off, getting on the machine – you only take your top half off. You get on the machine and that’s when they line up all the tattoos to make sure you’re lying in the same place every time. You have to make sure you’ve got movement in your arm because you have to put your arms up above your head. And then, once they’ve lined you up, they disappear from the room and zap, zap, zap, the machine zaps. And then they came back in and move the machine around because I had to have it in two different areas. And you’re zapped again. And that’s it. A minute. And then you go and get dressed. And there’s nice music playing [laughs].

And you went for five weeks?

Yeah.

Every other day?

Yes.

Did you use any, some women mention they used some cream.

Yeah. Yes, they give you the cream when you first go and tell you to put it on the area twice a day. Now, I didn’t do that in the first week because I wasn’t having a problem. And I thought I would get a rash or get sore or get itchy. And I didn’t, so I didn’t use the cream. When I went for I think my fourth visit, she asked me if I was using the cream. And I said, No, because I haven’t got any soreness And she said, You must use it, every day for two weeks, whether you’re sore or not So I got my knuckles rapped over that. So I did religiously slap the cream on twice a day. And it was only at the end of the treatment that I did develop a skin problem. It was like I’d been sunburnt and it was quite painful. And quite awkward because it was under my breast where my bra goes. And most of the time I went without a bra. But I was going to work on the days I wasn’t having radiotherapy so I used to put a vest on and then put a bra over the top of the vest. And that was much better than having the bra rubbing on it.

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Several women said they had been surprised to be invited to choose a radiotherapy appointment time that suited them. Some used hospital transport to get to the hospital while others used their own car or were driven by their husband or a friend. At the beginning of each radiotherapy session, the radiographer positions the woman carefully on the couch and makes sure she is comfortable. During treatment, women are left alone in the room but will be able to talk to the radiographer who will be watching from the next room. Radiotherapy is not painful, but the woman does have to lie still for a few minutes while the treatment is being given. Many women praised the care they got when they went for radiotherapy, several commenting on the friendliness of the staff, the efficiency of the procedure and the niceness of the environment.

Pam said all the staff at the hospital were helpful and that the procedure was efficient. Staff…

Age at interview 55

Gender Female

Age at diagnosis 53

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I was going up there just before Christmas. And that department, I can’t praise them highly enough. And it was NHS. And it just ran like clockwork. And it was down to all the staff because the car parking at [town] is a nightmare. And the attendants were so helpful, right from that car park attendant, helping you to park. And it all does become part of it. Because I was lucky, I’ve got a husband, we’ve got car, and they are very flexible on the appointments. they’re very good like that. He was finishing work anyway, sort of just after lunchtime, so the appointments were arranged for him to come home, run me up there. All I had to do was get in the car and go. But for some people, I mean, we were talking to people who were waiting for NHS transport and they were actually late turning up, or they didn’t turn up. Or they were on the road, because they have to drop half a dozen other people off. And they were out for the entire morning, or the entire afternoon. Or biggest part of the day. With cancers, you know. And you’re stuck on this bus and waiting for transport, so I can see how it’s, it can be an awful problem if, if you don’t have your own transport or you can’t drive or whatever. Or somebody you can rely on to help you.

I was lucky. And they were very good about the appointments. Do you want your appointments in the morning, would that be best? Do you want them in the afternoon? Would that be best? What kind Which you don’t expect with NHS. That’s more like private. You know, and I was quite surprised. I expected to be told, You be here at 10 oclock or whatever. By whatever means or you wait for transport you know. And I wasn’t, I was being given these choices, which I thought was very good.

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Radiotherapy was much easier than Shirley had expected. Parking at the hospital was the most…

Age at interview 72

Gender Female

Age at diagnosis 70

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What about the radiotherapy? What was that like?

I think I was lucky in fact, because it’s actually easier to get into the local town and the whole thing it was sort of an hour from the house and back again. The only thing difficult was parking [laughs]. But yes, I think I found it, after the initial couple of times, it was awfully easy, and the staff were highly efficient and charming and good. And I think I got quite tired, and, no, it was all, having thought of it as a terrible ordeal, I think, basically, it was moderately easy. And I didn’t burn, unlike a friend of mine whos just had it, who sounds desperately sore and miserable. And I think I’ve been remarkably fortunate.

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Radiotherapy to the breast sometimes causes side effects such as reddening and soreness of the skin, tiredness and feeling sick (nausea). These side effects gradually disappear once the course of treatment has finished. The tiredness may continue for some months. Some women wondered whether their tiredness was more to do with the daily journey to the hospital rather than due to the treatment itself. Perfumed soaps, creams or deodorants may irritate the skin and should not be used during the treatment. At the beginning of the treatment, women are given advice on how to look after their skin in the area being treated. Many women said they massaged their breast with cream for several months to look after it.
Radiotherapy may make the breast tissue feel firmer. Over a few months or years the breast may shrink slightly. The radiotherapy may also, rarely, leave small red marks on the skin, which are due to tiny broken blood vessels. For many women, however, the appearance of their breast is very good.
Some of the women we spoke with said they had very few side effects and that it was only towards the end of treatment that they noticed their breast was peeling or slightly sore. One woman said she had no redness or burning, though her breast felt hot on the last session and she felt a bit tired afterwards. Another said she worked throughout her treatment and, though she had no side effects to her breast, she did feel tired.

Elizabeth, a nurse, worked throughout her three weeks of radiotherapy. She found it tiring but…

Age at interview 50

Gender Female

Age at diagnosis 49

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On the first session it didn’t seem too bad and I was only going to have three weeks instead of six weeks soI found it very tiring because I was also coming to work in the morning at six, leaving at eight oclock so I could get to [the hospital I worked at]. But having to return to work, that was my coping mechanism. I was coming in and doing my office job, not being on the ward, or just making sure my staff was all right and then going for my treatment and then going home from there. So whether the appointment was nine or it was three oclock, it was the same method, just coming in doing my office work. Because I felt by not having everything piled up, when I was fit and ready to come back was less daunting anyway. So that’s how I dealt with it

The hospital where I worked was much more convenient for me. So I had this hospital.

Yeah. And you noticed that during this time you were a bit more tired than usual, or.

I think it was just, the whole thing was, because I used to leave home at five-thirty in the morning.

And not get back home until?

And not get back home sometimes until about six in the evening. But sometimes I was lucky, I would get home by noon or even earlier sometimes. Because I think the girls at the hospital were pretty helpful and pretty understanding so they would make it, sometimes they would change my appointments for me. And I think out of the whole three weeks, I only had about two afternoon sessions. Most of them were in the morning where I could just come in and have my session and go straight home afterwards. But still putting in an hour into my computer just to get my work up to date, you know, so.

Yeah. Did you know what to expect with the radiotherapy?

I didn’t no. I didn’t know what to expect. I was told I had to drink lots of fluids, had to keep my immune system up. And I wasn’t quite sure how I was going to do that because I’m not a very good drinker, I never drink and I never eat.

So through the day you don’t drink much water?

I don’t drink much water. I don’t drink a lot of anything. I never have to time to eat or drink to be quite honest until I get home in the evening. But saying that, again the instructions was given to me and I took it on. So I drank and I also try and keep, I kept as healthy as I could by having lots of fruits.

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A younger woman with DCIS said she felt ‘exhausted’ during radiotherapy. She hadn’t realised she would be having it daily for five weeks and also had two small children to care for.

Felicity found radiotherapy tiring, physically and emotionally, because she had two children to…

Age at interview 43

Gender Female

Age at diagnosis 41

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I was referred to [hospital name] and I went up there everyday for five weeks. But again I had a huge amount of support from my friends and from the breast care nurse. I don’t know, it was OK. You know, I was treated very well and it was, I just made the journey every day and by the end of it I was pretty exhausted and emotionally I think rung out by the whole experience.

How long did that take, getting to [hospital name]?

It takes an hour and a quarter from here with two small children. And to look after, but I made sure, they were very, very good actually. They put my times at a time that fitted into my timetable. So they were very, very good that way.

And I think that for me when I went into the radiotherapy it became a bit more impersonal because every time I went in it was different people. And that’s just, I’m not, it’s not a criticism because I was treated very well. But I truly believe that if you have even one person that you have a relationship with, it makes care, especially I think if you have to go through chemotherapy or. And maybe that happens but that was very important for me. And I think it’s probably important for everyone.

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Most women were happy with the information they were given about radiotherapy, though a few said they would have liked more beforehand because they hadn’t known what to expect when they got to the hospital. Several said they were not told that the breast had to heal before they could have radiotherapy. A few were also concerned about the effects of radiotherapy to their heart. One woman said that the doctors looking after her disagreed on whether she needed radiotherapy after her mastectomy, so she had to decide for herself and declined it. She didn’t want any more treatment but also felt she didn’t have enough information about it and whether she really needed it.

Elizabeth, a nurse, felt anxious when she hadn’t received an appointment for radiotherapy. She…

Age at interview 50

Gender Female

Age at diagnosis 49

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Then waiting for the radiotherapy was the next step. And that also put me in a little bit of an anxiety because you want, perhaps the information was given to me but perhaps I hadn’t taken it on board that I needed to heal first before the radiotherapy commenced. And I was waiting for it to happen and it wasn’t. And I think it was something like three, four, five weeks down the line, still waiting for the radiotherapy and just thinking is it going to grow again before I got to my radiotherapy. But then I found out later that my breast had to heal first before I could commence the treatment. So that within itself, being told before the radiotherapy commenced is that, it’s on my left side, I could have complications, my heart could be involved. That was another mode of anxiety again because, you know, you don’t know what to expect

And the bit about the radiotherapy may affect my heart, that used to give me a panic attack at night when I first had it because I used to think, Oh my goodness me You know, I think they’d zap my heart because it’s not beating as it should do. But then I still snap out of it, you know, because I could have been ringing NHS Direct every night after having my radiotherapy just telling them that I think my heart has been zapped because they told me it could affect me. But I’m a very, in that sense of the word, I’m very controlled and just think, Right, you rang them two nights running, you’ll have to stop this, this is not going to be good enough. You know, there’s nothing wrong with your heart, just get on with it And that’s what, and then I never rang them again so.

You rang them and did you feel reassured from the call or

Well, I never got through,

Oh right, you just talked to yourself about

Yes, I was there forever, I was holding on. And they were meant to be helping me and, in the end, my panic had gone by the time they answered, well they would have answered anyway And then I calmed myself down and then I was fine.

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One woman said she had radiotherapy to her reconstructed breast and nipple after a mastectomy. A few women said they were waiting to have radiotherapy. One of these women noted that, although she had invasive breast cancer in one breast and DCIS in the other, she would only be having radiotherapy to the breast in which she’d had invasive cancer. Another said she’d had a wide local excision and was waiting to find out if she would need radiotherapy, which she would be told about at her next hospital appointment.

Some women said they were told they didn’t need radiotherapy and they were pleased not to be given any more treatment. One woman said that, after having a mastectomy and immediate reconstruction, her doctor told her that she’d had DCIS as well as Paget’s Disease (a rare cancer affecting the nipple). He recommended she have radiotherapy and hormone therapy. After a team meeting, however, doctors decided radiotherapy was unnecessary because she’d had a mastectomy, but she found this worrying and confusing.

Sandra was confused about whether she needed radiotherapy. She wanted more information and found…

Age at interview 51

Gender Female

Age at diagnosis 50

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Anyway, on the Thursday, apparently I was discussed at the multidisciplinary team meeting. And I got a phone call to say, no, you don’t need radiotherapy after all. And that was devastating. I felt like I should be jumping up and down for joy, but instead I felt that I wasn’t getting the treatment I should be having. And that’s when I started getting really emotional.

You can’t, you know, well I was emotional and angry; I marched up and down this room. This doesn’t feel right, why, how can you be given three reasons as to why you need radiotherapy, cancer cells were too close to the chest wall, the cancer cells were all high grade, and they also found Paget’s, two lots of cancer as they described it. And now, I haven’t been given any reasons as to why I don’t. Apart from you don’t have radiotherapy for DCIS unless you’ve just had a wide lump excision. If you have a wide lump excision you’d have radiotherapy, but not if you’ve had a mastectomy, the idea is that it’s all gone.

And I really didn’t feel very confident at all. I phoned the Breast Cancer Care helpline, spoke to somebody there. She suggested really that I try to find out a little bit more information, that I ask to see the consultant, which I did do, and I got an appointment for the following week.

Following on from that I went into see the plastic surgeon. The plastic surgeon had obviously been told by the breast care nurse that I was worried cos I wasn’t having radiotherapy. He bounced in because he’s quite a character and said, I’m pleased you’re not, don’t need radiotherapy, it would have played havoc with my implant Oh like this. And I said, Well I’m glad somebody’s pleased And he said, Why, what is it about, what is it that worries you And I said, I just feel that I won’t know because the implant is there And he said, No, no, no he said, Your chest wall is now on the top, not underneath the implan he said. Because your chest wall, the muscle was lifted to put the implant underneath, it’s your chest wall that’s holding the implant So this bit here is chest wall, muscle, my chest muscle. So the breast is sat on top of this bit. So he said it’s now on the top. So he said if there was any hint of anything that was left behind, you would get a local reaction. And that’s when I felt more confident. I walked away and I said, Now I’m happier

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More experiences of radiotherapy can be found on the Healthtalk Breast Cancer site.

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