Ductal Carcinoma in Situ (DCIS)

Support from family, friends and health professionals

Women often said that they had been very pleasantly surprised to discover how kind and helpful their families, partner, children, friends and work colleagues could be. Practical as well as emotional support was greatly appreciated' a husband might massage an aching back; a friend or family member might accompany the woman to an appointment, cook a meal or encourage her to keep up her social life; a friend might collect children from school or look after small children so that the woman and her partner could attend appointments together. One woman expressed how grateful she was that her sister arranged to be there when she came round from surgery. Another said that her family were wonderful at keeping her spirits up and could even joke about it.

Long standing marriages and friendships were sometimes re-appraised in the light of the diagnosis. One woman commented that she realised her husband seemed to be more attentive now; another that she had realised how important her friends and family really were.

Patricia's husband seemed more attentive and in tune with her.

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Age at interview: 54

Sex: Female

Age at diagnosis: 53

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I was silent, I was a lot less chatty than I would normally be. And the nice thing about, I think the fact that it was just my husband and I at home at that time, without either of the children, because they were both off doing their own thing, was that I could just talk to [husband’s name] whenever I felt like it. And when you’ve been married as long as I have, you tend to find that you’ll be talking and they’re not really listening, you know, you get the grunt, you get, but it was so noticeable that he was listening to me because he would just respond with a really sensible answer, you know. Whether it was a something like, “Oh I wonder how long I’ll be in hospital for?” And he’ll say, “Well they’ve said two or three days.” You know he would respond straightaway, he was listening, he was in tune with me, and I think that was the greatest consolation to me, that he was aware of what I was going through. And presumably he was going through it himself in his own way. And worrying.

Sometimes it became clear that people could offer different types of support' one woman reflected that while her husband was great when he accompanied her to appointments he was not as good as her friends when she needed emotional support.

Felicity's close women friends gave her the emotional support she needed.

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Age at interview: 43

Sex: Female

Age at diagnosis: 41

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I had an extraordinary amount of support from my friends. Yeah, huge support. I've got a very, kind of, close core of friends who just, [friend’s name] being one of them I have to say, who really looked after me. A lot of support there. I think my husband found it very hard to deal with, but not at all in terms of my body image. I just think he's not very good at looking after people who are not coping. You know, so for him you've been diagnosed, they are going to cure you, you're not going to die. It’s fine, what's all the fuss about? So that was quite hard. But that's a personality thing. He just, you know, he's not great on that kind of emotional support, generally speaking. It’s not something he does very well. So that was very difficult. And I think without my friends it would have been really hard. But they were great. No, I had a really close core of good girlfriends, and their friends as well.

Women who were single or divorced often described particularly strong support from friends and family. As one put it, her friends were ‘like the family you chose yourself’. A woman who lived on her own said that a friend insisted on coming to look after her after surgery when, due to the general anaesthetic, she did not want to be left alone. Another commented that everyone ‘came up trumps’' friends behaved like friends should and even some of those who she had not realised were friends turned out to be really supportive. Others were amazed and delighted to receive cards and flowers or to hear that people were saying ‘prayers to many different gods’ on their behalf.

Some women said that they preferred not to have a lot of ‘sympathy’ from friends, or that it had been hard to accept help. A nurse, who was single and very busy at work, did not want anyone to go with her to get results but did agree to ring a friend when she returned home. She talked about the importance of choosing the right moment, person and circumstances when she was ready to talk about how she was feeling.

Some people do not know what to say or ask inappropriate questions. Since coming to live in the UK she has learnt to be self-sufficient but has one friend who is a very good listener.

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Some people do not know what to say or ask inappropriate questions. Since coming to live in the UK she has learnt to be self-sufficient but has one friend who is a very good listener.

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Age at interview: 50

Sex: Female

Age at diagnosis: 49

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I think some people just can't talk about it. And some people don't know what to say, and some people overdo it. So it's you as an individual has to take the person or the persons that, the people that you know that you can pull from, the people who are going to still make you laugh and not give you gloom and doom about the internet. You know, about the internet and I've read so and so and I've read so and so and oh my god and does that mean? You don't, you know, need that, you know. And what about if you’re supposed to meet a man and make love to the person, do you know, it’s, “What do you think?” Like you don't need people asking you those questions. You just have to, you know, pick the people that matter most.

And who can support you in the way that you need.

That you need to be supported. I think the reason why I cope the way I coped is because I've been in this country for an awfully long time and I came to this country by myself. And because I never had a mum and dad, you have to do everything for yourself. And so there aren't many moments to cry and to feel sorry for yourself and say, “Look, you know, …” whether it's to do with money, whether it's do with a bad day at work, you know, there's nobody there. So you just have to get up and do it yourself.

And I think that's, if people think that it's, you know a lot of my nurses find I'm a very hard person but it's not, I'm not hard. I'm hard to, I like the best for my patients, I've always done that. If you can't provide the care, you shouldn't be doing what you're doing. And I try and say that to them every day. And on the other hand, yes there are times when I need to talk to somebody and I've got a friend in [place name] that sometimes said ‘you should be Marjorie Proops’, or whoever it is because you’re quite good at listening. And we've been friends for years. So, therefore, you know, if there is anything I would ring her more than anybody else. Yeah. And I think because she's so far away as well, I wasn't seeing her, she was able to support me over the phone.

But I think it's a very stressful business and I think that I could understand how some women feel that they need to talk about it every five minutes of the day. Because you're just looking for the reassurance all the time, that people are saying, “Look, you're not going to die. This is what you've got, there are a lot of treatments out there, people are doing their best every year, things are different.” And you just have to really take one day at a time.

In some cases women felt that they needed to protect other people rather than receive help. One woman told us that she needed to be careful not to upset her husband, who had had a stroke. Another had not told her elderly parents and one woman said that other illness in the family had distracted attention from her, which she welcomed.

Sometimes family and friends did not behave as women would have hoped – perhaps because they were unsure what to do. One woman was hurt that her siblings had not been in contact since they visited her in hospital: she had heard that they were concerned about ‘waking her’ if they rang.

Support from breast care nurses

Sometimes it was not clear to women how the various professionals linked in and worked together, though the breast care nurse was usually seen as having a key role in offering support and information. Some women thought that they were benefitting from the good services that are in place for women with breast cancer, a high profile disease with good support from the NHS and voluntary sector. One described the breast care nurses as a ‘godsend’ who not only offered direct support but put her in touch with a support group. Those who praised the hospital nurses sometimes also commented that they were too busy to offer long term support – as one woman put it they were ‘just swamped’.

Linda describes the breast nurse as her rock ' it was her job to be nice but they also developed a real empathy.

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Age at interview: 54

Sex: Female

Age at diagnosis: 53

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So the breast care nurse came, I mean she was marvellous, she was a, she was my rock in the end, even though she was patting my hand and you know all lovely and so on, that’s her job. In the end she was actually somebody that I really turned to and I felt an empathy with her. I had to hug her, and you know, she was sort of knowing how I was feeling, because whilst your family and your friends are so sympathetic and they come and see you, and they’re all looking at you and giving you that sad look, and, “I’m going to be okay, I’m going to be fine.” , but they don’t know what it’s like. You know, you show them the scar, you show them the breast that’s gone, and, “Oh it’s not too bad is it?” Well it might not be too bad for you to look at, but for me to see everyday in the mirror, to be honest, I feel like a freak, and I’m sorry to say that, but I do.

Agnes said her Macmillan nurse should be given a medal: ' she was an excellent source of support and information.

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Age at interview: 54

Sex: Female

Age at diagnosis: 53

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I think my Macmillan nurse should be given a medal. You know, some people can, they’re just sort of neutral and this lady is treating you as you are the most important person on earth. And she could have done the spiel about what, 200 times a month, I don’t know what is her caseload but probably hundreds of people and she just treats you like you are the only one. And it’s so good when you can’t really think straight anymore. And she just, not cheers you up but tries to keep you normal, try to keep give you the amount of information that she probably feels that you can digest at any given time.

And just the fact that she’s there and even if she’s not there, I can send her an email and I’ll get something back in two days time. Or if it’s not, it’s only a two person team. And I’ve met both of them now and they’ve lovely, they’re lovely people and they should be just paid five times as much as they are now.

So you found them very supportive?

I found them extremely helpful and very good. And very kind people. And they’ve probably learned by now that women who’ve been told that they have breast cancer they can go all over the place [laughs] and they did find a way to cope with all that. And not just cope with all that but being careful at the same time and supportive, it’s really good.

Last reviewed July 2017.