How DCIS affects families

Some women with DCIS thought that the diagnosis was possibly more shocking and disturbing for their close family and friends than it was for themselves. One thought that it could be worse for her best friend because ‘it’s happening to someone you care about, it’s worse because you feel helpless and you’re worried. And you think they’re going to be ill. They’re going to be in pain. They’re going to die.’

Pauline feels that her family had all the worry but there was nothing they could do.

Age at interview 52

Gender Female

Age at diagnosis 49

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It does have a huge impact. I mean I was very positive about it, I didn’t, I just thought well you know let’s just, you know, nothing you can do about it so get on with it. So I was very positive and suppose you could say upbeat.

I was more worried really in a way for the family because you can get on with it, they don’t really have a role, other than supporting you and I think for them it’s actually really quite, very tough. Because they’ve got all the worries but there is nothing they can do.

And they, they’re almost in limbo, having to sort of hopefully say the right things, and I know my daughter who was sort of, she was coming up to AS levels, she’d just done GCSE’s, she got almost quite bolshy from the point of view I think that was her way of dealing with it. Because she was obviously worried and didn’t want to talk to me about it and worry me.

So that was her sort of way of coping, putting up the barriers I suppose. My husband was brilliant, very supportive, I mean he had moments when you know he’d think ‘Oh God am I doing the right thing,’ but we didn’t really as a family ever sort of argue or, I mean he just went along with whatever I wanted, which was great. And again my daughter as well, you know, they were both brilliant really.

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Often, women thought that the experience of having DCIS had brought their family closer together. One felt that her sons listen to one another more now and several said that their husbands had been very understanding and considerate. One woman said that her husband was ‘obviously trying to be strong for me, trying to give me confidence and help’.
A younger woman with DCIS said that her husband had taken over a lot of the childcare in the weeks after the diagnosis when she was anxious and not sleeping at all well. She knows that he was also very worried about her but that he somehow managed to block it out and get on with what he needed to do.

Jos husband seemed to be able to block out his emotional reaction to the diagnosis. She does not…

Age at interview 42

Gender Female

Age at diagnosis 42

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How was your husband through these three weeks?

He was great. Fine. Yes he was great. What can I say about, you know, he was pretty worried. But he didn’t say very much. But he was taking over more of the childcare at that point. A lot more because I was just a bit too wreck like, you know not getting my sleep. And just finding it, it’s almost unbearable having anything to do with the children. It was hard to think when you’re in extreme stress, just this whole childcare thing is so difficult for you. You just sort of want this operation to come. But [my husband] was great. Yeah. It was fine.

Did you feel that he needed someone to talk to? Or you felt that he was coping ok?

He was fine. I mean there wasn’t really much to say. I don’t think he would’ve spoken to anyone. You know, men. I mean I supported him if he needed it. But I think we were just waiting to see what happened. I think he really blocked it out, to be honest because you know it was a big worry for him. I think he blocked it out. He didn’t seem overly upset. It was pretty horrendous for him and I at the hospital, and he had to say goodbye. He was very worried about that. I know that. It’s awful.

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Effects on children

Mothers were often very concerned about how to tell their children about their diagnosis and treatment (see Telling other people). One woman suggested that it is important to show that you are doing okay so that the children are reassured.

Liz says that it is important to stay positive for the sake of the children.

Age at interview 50

Gender Female

Age at diagnosis 50

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And how were your children through all this time? When you told them but also when you told them that you’d have to go back for more surgery?

They’re worrying now, they are worrying and I know that, and I can see that, and of course all the while I’m positive and positivity, it’s not just the key to be positive, you’ve really got to have, I believe, that state of mind too, because you can be positive but you can slip back into being negative quite easily, about it all and they can pick up on that. And I find that that there’s, many things that I do that keeps me occupied and ready for anything that comes about now, and I can deal with it, and maybe see that, and so,them seeing me happy, whether inside I’m a fumbling wreckbecause I don’t like the surgery, you know I’m not quite there yet, I’ve got two weeks till surgery.

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Children’s behaviour could change in predictable – and less predictable – ways.

Sandra’s son became more disorganised at school and tearful. She worried that he was finding…

Age at interview 51

Gender Female

Age at diagnosis 50

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I also had a few problems with my eldest son. He was having counselling at the school now because he is ever so disorganised. Now he’s up to Grammar School and he’s a very bright boy, but he has very little common senses [laughs]. But he, it tends to be Mum who says, ‘Have you put your homework in? Have you done that? Have you put this in? Have you got the right PE kit?’ This sort of thing. And when I was in hospital he didn’t not do his homework, but he forgot it. He took it in the wrong day. He packed, he has a two week timetable, he packed things for Tuesday on week 2 when it was week 1, and things like that. So consequently, and they’re quite strict, so he got homework marks, so many homework marks equals detention, and he only ever had one homework mark in all the time he’d been there. So what I did was contact the student support to say that look this, all this has been going on.

Both schools, both my younger son’s primary school and the Grammar School were very, very good with the supporting the boys. And the other thing that he did was he would, they said he would just be in lesson working, and he would just break down crying. He said, ìI don’t know why I was crying.

The other thing he did was, I would catch him on cancer websites, which again is not a good thing. So again I’m saying to him, ‘I haven’t got cancer like that. I didn’t need radiotherapy did I? Luckily. ‘Cos that was also another thing. ‘I didn’t need chemotherapy, it wasn’t invasive, it’s gone. You know these sort of things, but he’s now getting a bit better. He is better now, but that took a while. And also when I got his grade cards just before Christmas, oh they were down, definitely down, almost every subject compared to, they’ve picked up again since going back after Christmas, but yeah, his grades went down.

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Hilary’s 19 year old son was terrific. He went to a department store to buy her a larger bra (an…

Age at interview 57

Gender Female

Age at diagnosis 50

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My son’s a star. When I needed a bigger bra and I was in the hospital and I hadn’t been told I needed a bigger one, and I mentioned it to my husband and my son was there, and he was only about 19 at the time and my husband said, ‘Oh where do I go? What do I do?’ And my son said, ‘Oh, I’ll sort it, don’t worry. He went into the department, the lingerie department at the local big store and, mum’s got this, she needs something like this, this and this and no seams and none of this, Bless his heart.

But those expandable things are very good as well. That you have on the back of normal bras. So if you’ve got a soft sports bra rather than buying a new one just for a couple of weeks or so. And front fastening nighties. Sounds crazy but with all those drips and things and they want to look at your breasts so you want something front fastening, then you don’t have to keep getting, and you can’t pull things over your head.

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Younger children could be really upset to see their mother in hospital – especially if it was soon after surgery and she was still on a drip. One woman’s son had initially seemed to react well to the news but became upset when he saw her in hospital.
Children of all ages are likely to have heard of other people who had had cancer and this, inevitably, colours their view of their mother’s diagnosis. Celebrities with cancer and plot lines in soap operas also raise awareness about the disease among children. Parents might not always know that their child is aware of cancer but even quite young children know the word and are sometimes very fearful of its implications.
One woman’s 15-year-old daughter became very upset and asked ‘Are you going to die?’ Her daughter wouldn’t look her in the eye and she thought that she was frightened because ‘as far as she knew cancer meant death’.
One woman said her grown son did not ask her any questions about her illness but had a friend whose mother had invasive breast cancer and so knew that his mother was ‘getting off reasonably lightly’.

Views on breast screening

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