Ductal Carcinoma in Situ (DCIS)

Telling other people

Many of the women we talked to were accompanied by their husband, another family member or a close friend at the consultation where they were given the diagnosis. In the following hours or days they had to decide how (and in some cases whether) to break the news to other people, including their own children and parents.

One woman told her mother and children that it was ‘non-invasive, non-malignant and contained’. She told her friends and colleagues that it was not ‘full-blown cancer’ and that she felt very positive about it. But, as she pointed out, ‘the word cancer does frighten people’ and some wonder if they might also be at risk – particularly if the woman who is diagnosed seems healthy and does all the ‘right things’ to look after her health.

Jane thought very carefully about how to break the news of her diagnosis to her husband.

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Age at interview: 59

Sex: Female

Age at diagnosis: 58

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My husband was obviously the one I was most worried about because he is quite an emotional person and that was the worst point in a way, was how to tell him. I told him what was going on before we had a definite diagnosis of DCIS. I told him what was going on when we knew I had to go back to see a specialist and I probably did have something wrong. And that was it. And I thought really hard about how to say this without sounding alarming. I really thought hard about what words to choose. Because however you start a conversation like that, it’s alarming for somebody. And I didn’t want to start it by saying, “I’ve got some bad news”, or “I’ve just been for a breast scan and they think there’s something wrong.” And in the end I decided on the phrase, “I’ve got some news which might be unwelcome.” Which is a bit stilted but I just didn’t want to say, “I’ve got some bad news,” because we didn’t know it was bad news at that stage. And that was the only time I really, really thought about telling somebody because I knew he would be upset and I wanted to minimise that. With everybody else I just tried to be very normal, just bring it into the conversation in a normal way without being over-dramatic and without being under-dramatic and trying to hide it. So I think that worked really.

Some women chose to tell a sister before telling their parents. A few women were concerned that there might be a genetic link which could make them vulnerable to cancer – some women advised their sisters to have a mammogram. Those who had not mentioned to other people that they had been recalled after a mammogram were aware that the news was particularly shocking. Because most people have not heard of DCIS, women sometimes had real difficulty explaining what it was, how it was treated and how it related to invasive breast cancer. As one woman said, ‘Everybody’s heard of breast cancer but nobody has heard of DCIS’.

It helped if the diagnosis had been explained in terms that the woman could use when she told other people. Several women left copies of leaflets about DCIS with their relatives and friends to help them understand.

Jane's doctor was very reassuring which made it easier for her to tell other people. She nearly always had to explain what DCIS is.

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Age at interview: 59

Sex: Female

Age at diagnosis: 58

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I think telling people I did fairly naturally. I tried to share it with people in a natural way, without being dramatic about it. Or without rushing back to work and saying, “Oh guess what, I’ve got this and they’re going to do this.” Because that’s a bit wearing for people. Obviously I have to prepare people. And I did feel it was quite interesting having to tell people about it because nobody knows what DCIS is. And so I nearly always had to explain what it was. And I felt, by the end, I felt on a slight mission really to encourage people to have mammograms because I had absolutely no symptoms whatsoever. I had no lumps. I had no soreness. I had no visible signs. So if I hadn’t had the mammogram I could have gone happily on for years and then suddenly had full-blown invasion breast cancer, I’m sure. So I just feel, my basic feeling is that I’m really, really grateful that I had the mammogram and that they found out about it. And that is was relatively speaking to my mind, such a minor thing. I know it’s not a minor thing but it was … I thought it was a minor thing. And I felt I was just very, very lucky to get away with it.

Telling Children

Women who had children living at home often found it hard to decide how and when to tell them. It was a good idea to inform teachers, who were invariably kind and thoughtful about how they handled the child at school.

One woman asked her breast care nurse for some information about talking to her children, who were aged ten and twelve. She followed the advice to be open and to use the word ‘cancer’ and was surprised to find that her children reacted almost exactly as predicted in the book she was given by the nurse. Her boys were aware of ‘plastic surgery’ but (like many others) associated it with celebrities such as Jordan and Michael Jackson.

Sandra asked her breast care nurse for some information about how to talk to her ten and twelve year old boys about her diagnosis. It was surprisingly accurate in predicting how they would react.

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Age at interview: 51

Sex: Female

Age at diagnosis: 50

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I asked for some information from the breast care nurse about talking to your children. And I read that cover to cover to cover. ‘Cos that was the thing that I was really not looking forward to. And my children reacted almost exactly how the book said that they would react. And it was funny because I would not have, I found it very useful. I really would, my oldest child was 12 then.

They were 10 and 12 and my oldest child, they actually said that he would be more concerned with the way that you’re going to look in front of their friends. And my son is not very old for his years, he’s quite immature really, and yet that’s exactly what he said. He said, “How will you look? But what, like, what about when you pick me up from school?” So I was able to say that I won’t look any different. I won’t look any different because I’m going to have plastic surgery, to have another breast done.

And my ten year old, he picked up on the plastic surgery, and straight away said, “Are you going to be a Jordan? Or Michael Jackson?” Which just goes to think what children think about plastic surgery. “You’re going to be like…,” and he went a bit silly really. I think he just went a bit silly and started being a bit giggly. I did use the term, “I have got cancer, I have got breast cancer, but it’s been found really really early and it’s confined to the milk ducts, it hasn’t spread anywhere else, but I am going to have to have my breast cut off, but I’m going to have plastic surgery to put it.”

Because that’s exactly what the information, I mean I would have, as a children’s nurse you should tell children the truth anyway, but it definitely said that you shouldn’t skirt around the issue, you must use the term cancer because they may hear somebody else say it. If you’ve said something different, “I have an infection” or something, and then heard the term cancer so… The other thing that was quite interesting was it did say that they would be likely to, they may discuss it with their friends, it may be helpful for their friends to know.

Sandra gave a booklet about talking to children to her next door neighbour. She overheard the two ten year olds casually discussing her surgery while they bounced on a trampoline.

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Age at interview: 51

Sex: Female

Age at diagnosis: 50

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Our next door neighbours have got five children and they all play together, so I actually gave the booklet to my next door neighbour to read as well. And then I told her exactly when I was telling the children, and what happened was they were all playing in the garden, and I asked the boys to come in because there was something I wanted to discuss with them, and she called her children in at the same time, so my next door neighbour literally told her children about me at the same time as I told mine.

After about five or ten minutes, they all went out to play again and they were all on the trampoline, and I heard my ten year old talking to the ten year old boy next door and they were jumping on the trampoline, and my son said, “My Mum’s got to have something cut off.” The neighbours son said, “That’s fine,” He said. “Sam’s had loads of things cut off and he’s been fine.” I have to say Sam is the dog. So he said, “Sam’s had loads of things cut off and he’s been fine.” He said, “How would you feel if you were told that you’d got cancer and you had to have a plastic willy or die in five years?” So [son’s name] said, “I’d rather have a plastic willy.” And my son said, “Yes, so would I.” And they just carried on bouncing. And it was a really, really strange thing to say, I have to say he got his five years because I said, “It could be five years before it turns into the cancer.” So that’s where he got the five years from. But I always thought that was a very funny way of, so I thought they actually did very well at the time.

A younger woman with DCIS tried to explain to her five-year-old that she was having her ‘breast taken off’ but thinks that she made several mistakes and misjudgements, including telling him that she would be ‘asleep’ when it would happen, which made him really upset. Another decided not to tell her four-year-old directly but thought it was important to be open and did tell her older child. Both children came to see her in hospital, which they found distressing at the time, but she thinks that they now seem very comfortable with her scar and prosthesis.

Jo found it very difficult explaining to her five year old that she would be having a mastectomy.

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Jo found it very difficult explaining to her five year old that she would be having a mastectomy.

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Age at interview: 42

Sex: Female

Age at diagnosis: 42

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Then I had to tell my oldest who’s five. I’m going to have my breast taken off. Which he, it was horrendous. And he said well, what do you mean taken off? I said, well, because I had to tell him because he would notice…. He would notice it wasn’t there. “Do they use knives?” And I said, “Well yes but I’m asleep.” But then of course, oh my god I don’t want to tell him I’m asleep because then he might think, so it’s very horrible you know. So it was horrible. He was really upset.

But then afterwards they just, and in fact recently they said, “Your breast is broken”, what they call a breast, you know. It’s broken, I can’t fix it. You know, and they’ve seen the scar and they’re fine now. But at the time it was horrendous, really. The children thing is, this is why the young women thing, it’s important, not that I want to tell people it was horrendous but that’s the stress of it. The actual thing is fairly minor, the mastectomy, really. It really is.

Telling older children can also be difficult. Teenagers can react in various ways – sometimes appearing nonchalant when they are told but secretly being very anxious and wanting to discuss it all with their friends, even if they are silent at home. One woman said she tried to avoid telling her student daughter until after exams but it all became too complicated when they found they were having to lie about hospital appointments during the school holidays.

A woman whose 23-year-old son has autism had to handle telling him particularly carefully because his father had died from cancer.

Mary explains how, by using an up-beat and positive message and body language, she was able to prepare her sons (who have autism and separation anxiety) to hear about her diagnosis.

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Mary explains how, by using an up-beat and positive message and body language, she was able to prepare her sons (who have autism and separation anxiety) to hear about her diagnosis.

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Age at interview: 50

Sex: Female

Age at diagnosis: 50

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I did have to deal with it in a special way with both of them because one of my sons has separation anxiety disorder, and he actually does worry about me constantly dying. It’s the phase that they go through, and that I’m not going to be here when he comes back. And due to a difficult marriage break up and things that in the past, that have happened in our personal life, he’s more worried about that now and closer than ever to me.

And so it was a very, very difficult situation and I had to think about how I was going to tell them. I had to get over the shock myself, and then I had to think about it. So on the way back from my diagnosis I decided to tell my autistic son, because he was well on the ball, he knew I was going to hospital and he knew that they were taking out these bad things from Mum and that. But what I told him was that they’ve got some, you know, I bounced around the kitchen as I told him, and I said, “Now they’ve got some cells in there,” I said, “but they’re not that good, and they’re going to take them out. And it’s going to be over and done with in no time, and everything’s going to be fine.” And I left it like that. And he was fine with it, he was great. He didn’t worry about anything, and I thought good, I’ve dealt with it that way.

And so the same again with the other one. Now of course when they told me that there was more there, I knew that I had to tell them because who knows what it could progress to and, to be honest, I felt really, I didn’t feel right not telling them, and you can’t keep something like that from your children. You can’t you because where’s the trust, you need a lot of trust in a family and we’ve always had that. We’ve always been open and been able to tell each other anything, and I think that’s what you need to be doing in that case.

So I knew that I needed to know how to do it. So I just chose one day, and funnily enough it just, it was meant to be, because this was the day I was going to tell them and I’d been researching myself that particular day, but because I had a very nosy young child who’s always wanting to see who I’m talking to or what I’m looking at, and I think deep down inside he’s a very bright young man, knows full well that I’m researching something to do with breast cancer. So he says to me, “Mum,” he said, “He said you’re researching a lot,” I said, “I know,” I said, “I’m doing it for a friend.” He said, “Oh Mum,” he said, “Give me a bit more credit than that.” He’s eleven years of age. And I said, “Well guess what. I am, but I am also researching for myself.”

It was as if it was meant to be because I knew one way or another he was going to suss things out, because you just can’t keep it from them. So it was my opportunity, and I said, “Right okay,” I said, “Guess what, I’m researching it for a friend who wants me to research it for myself also, because there’s a possibility that I have the cancer cells there.” And I did it with such a, you know, a bubbly outgoing attitude, and I said, “And guess what, you’ve seen me now, since I’ve been to the hospital for the last 3, 4 weeks, and what have I been like?” He said, “Mum you’ve been fantastic.” I said, “Exactly.” And I said, “Guess what, that’s how I’m going to stay.” I said, “Because this is just another challenge that we’re going to get through.” I said, “We’re going to do it together.” I said, “How about that,” I said, “And what are we?”

One woman had told her grown up daughter that she was going for further tests after a mammogram but had not told her 19-year-old student son. She describes telling her children as ‘the worst thing’.

Jane broke the news to her daughter on the phone and gave her 19 year old son leaflets to read. Her daughter was very upset but was later reassured after coming to an appointment with the consultant.

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Jane broke the news to her daughter on the phone and gave her 19 year old son leaflets to read. Her daughter was very upset but was later reassured after coming to an appointment with the consultant.

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Age at interview: 50

Sex: Female

Age at diagnosis: 49

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Because my daughter knew I was going for the result on that day and we'd been kept waiting. And think I've worked out that they tell the bad news at the end of the morning, I'm sure they do. I don’t know if that's right. But we'd been kept waiting, it must have been over an hour and a half to be seen after my appointment time. So she kept texting and saying, “Have you heard yet mum? Have you heard yet?”

So of course when I came out, I had another text, “Have you heard?” And I didn't know. She works in [place name]. And I should, now, I should’ve just, we should’ve gone straight to [place name]. Gone and got her and brought her to the car and told her. But I phoned her and said to her on the phone, she goes, “What, is it ok mum?” I said, “Well it's not good news but it's not bad news.” Because to me that's what it was. It wasn't all bad. I’d been told that yes it was, but we can do this and it'll be gone. So I told her over the phone. But then she got very upset.

So then we went to [place name]. And took her into the car and tried to reassure her that, you know, it's really not as bad as…. Because when you’ve seen the doctors and the nurses, they're so positive about it that, so positive. And they make you feel, you know, they make you feel at ease. Of course she hadn't been with me so she thought it was me just covering up and trying to protect her. So the following week when I had to see the consultant, she came as well because I wanted her to come and, you know, hear it from them.

Yeah. And did she, did she feel reassured?

Yes, yes, oh yes, once she'd seen the consultant, yes. Yes she did, she felt much better. And I gave my son the leaflets to read as well because it was easier to give him the leaflets to read rather than me talk to him about what was going to be going on. It's difficult for a nineteen-year-old boy.

Telling friends and colleagues

Telling friends and colleagues was usually a positive experience – friends rallied round and work colleagues (especially other women) could be very understanding and supportive. Several women said that they always tried to be as open as possible and that to behave in any other way was just too stressful.

Sometimes the people who the woman most wanted to tell were not to hand or were embroiled in their own problems. One woman said her partner was away and her best friend was not available so she went to see her sister, who she found helpful and understanding.

People may prefer to keep their work and personal life separate and use work as a distraction from their health worries. One woman said she’d told everyone at work that she was going for a routine mammogram but had joked about it because she had not expected there to be anything wrong. She later regretted having told so many people because they wanted to know if the results had been okay.

Sandra regretted having joked with her colleagues about going for a mammogram. She found it very upsetting when people tried to comfort her.

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Age at interview: 51

Sex: Female

Age at diagnosis: 50

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Next day I went to work. And this is what I regretted really. We was having a laugh and a joke with so many people about going to have my boobies squeezed because I walked in and everybody knew. “How did you get on, how was it? How was it?” It was awful, I couldn’t say the word. “It’s cancer.”

Did they know you’d been recalled?

Yes. But I’d still didn’t think that it was, I just thought that it was cysts. I think, because I’d had to cancel the clinic and there was the secretary’s, and oh, it was, in hindsight I would never have told so many people.

I am also one of these people who thinks that you know, let’s have things out in the open, it’s nothing to be ashamed of and that sort of thing. But there was so many people then that knew that I’d got a diagnosis of breast cancer, that everywhere I walked people were putting hands on my shoulder, putting their arms around me. I thought, “Please go away. Please just let me be normal, stop keep treating me like a victim.” And a victim was really what I felt. I really didn’t want to be on the other side. And in hindsight I would never ever have told people like the way…

And the thing was as well, every time I tried to say to somebody it was cancer, I just kept crying, and I got to the point where I said, I’m not telling anybody else. And I said to my colleagues, “Go out there, tell them all, so I don’t keep getting asked,” I said, “because I can’t say the word cancer.”

And actually ironically, our receptionist, they told her and she, then they came back to me and said that the receptionist had said she had breast cancer seven years ago. And I didn’t know that. And she found it really difficult just to say the word cancer. And I can’t remember what terminology she used, but she still called it, I don’t know, “thingamajig,” or something. “Since I’ve had that thingamajig.” And it was, so it was quite nice actually because I actually then went to talk to her and, you know, she was really, it was so, it was nice actually having somebody else that knew.

Jane said it was very difficult to tell her head teacher because she had recently had cancer herself.

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Jane said it was very difficult to tell her head teacher because she had recently had cancer herself.

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Age at interview: 50

Sex: Female

Age at diagnosis: 49

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I was working at the time. Yeah. It was not too bad. It, people think if you’re ever diagnosed with something like that, how do you carry on? But really, you know, as I've said, that they were so reassuring. So it was fine. It was very, it was hard to tell. I work in a school and it was very hard to tell the head teacher because she had recently had cancer. So it's really hard because I know hers was serious and still is very serious. And I didn't, I found myself getting upset and I thought I shouldn't be doing that because she's got far more serious problems than I have. So that was quite difficult, telling her.

And I wanted her to tell the other staff rather than, I didn't really want to tell them. So she had a meeting with them all and told them.

Yeah. And that you would be off work for…

Yes. I think I was off about three weeks because I work in a school, in a class with four and five year olds. So it's quite physical work. And so I had, I think it was three weeks off.

Yeah. And was that all during term time or …?

One of the weeks was half term. Yeah. One of the weeks was half term and then the other two off school.

With hindsight, one woman wished that she had not told so many of her neighbours and acquaintances about her surgery. At the time, though, she needed help with child care and felt that she wanted, and needed, to explain why this was. Some women were a bit disappointed with individual neighbours, colleagues or acquaintances who did not seem to know what to say or how to react. Fortunately this was relatively rare and most women found that they benefitted from telling their families, colleagues and friends.

Pauline said that most people are very supportive but some don't really know what to say.

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Age at interview: 52

Sex: Female

Age at diagnosis: 49

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Did you find colleagues supportive as well or not?

You got a mixed reaction. Some are, I mean on the whole people are very supportive, but I think people don’t know what to say. I think people find it very difficult to know what they should say to you. So you get the question “Oh, you OK?” But you know they’re petrified you’re gonna say “Well actually,” and they just want to make sure you’re OK but they don’t necessarily want to talk about it [laughs].

And I think it is this thing of, if you haven’t been through it yourself, it’s difficult to talk to people. They just feel, I don't know what it is, but it, I think it’s hard for people sometimes. I mean I don't mind anybody talking about it, but I won’t initiate it unless they do.

Yeah. Did you find it difficult telling friends? Or did it vary depending on the person?

Yeah, I think it varied depending on the person very much so, yeah. If I didn’t know somebody very well I probably wouldn’t mention it, you know, but if I know somebody well then I’d talk about it, be quite happy to. But there is definitely a sort of taboo somewhere and you can sense it from some people and other people you don’t get it at all.

Last reviewed July 2017.