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Ductal Carcinoma in Situ (DCIS)

Views on breast screening

Many women were glad they attended for routine breast screening when invited on the NHS Breast Screening Programme. They said that they had no breast symptoms and, had it not been for screening, they would never have known anything was wrong. Several said they were grateful that the NHS Breast Screening Programme existed and that women aged 50-70 were routinely invited every three years. Some women said they felt lucky their screening invitation had arrived when it did because, had they waited longer, their DCIS might have become more serious, several saying they were pleased and reassured that it had been ‘caught early’.
 

Jacky feels that breast screening saved her life and urges other women to attend. She points out...

Jacky feels that breast screening saved her life and urges other women to attend. She points out...

Age at interview: 61
Sex: Female
Age at diagnosis: 52
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Well, I would say to them, please go and take the screening because it saved my life and it could save your life. I know some people are frightened in case they find anything but that's what you want them to do. That you want them to find it because if they don't find it, it isn't going to go away. And the sooner they find it, the much higher chance you have of completely successful treatment and don't, at the moment I think the ceiling is 60 for mammograms but that is now being extended to 70.

 

But if it hasn't in your area yet reached 70, there will be a number that you can get from NHS Direct where you can phone and refer yourself if you are over 60. If you're over 70 and you can still do that because some ladies think that because after, because the mammograms stop at 60 or 70 they're no longer at risk. But, unfortunately, the older you get, the more at risk you are so because you're 70 don't think you're not at risk.

 

So please, take these mammograms, it's only a few minutes pressure on your breast. It's only ten minutes to go through the whole process and it's a life-saver and it could save you so much grief. So please, please do have it. And I'm so glad that I did because it's such a life-saver and I just wish they could do this for every sort of cancer because it is such a preventer, preventive cure. Please, please have your mammogram done.
Many advised other women to attend for breast screening and not to be scared of it. Several noted that, though the mammogram can be uncomfortable or slightly painful, a few minutes of discomfort was worthwhile because it could detect breast problems at an early stage. Some women said that, because of their own experience, they encouraged their sisters to attend for routine breast screening. Others were keen that their daughters attended. Several said they would like to continue going for breast screening after the age of seventy, and some that they felt breast screening should be offered to women under fifty as well, particularly those with a family history of breast cancer. The NHS Breast Screening Programme in England is currently phasing in an extension of the age range of women eligible for breast screening to those aged 47 to 73. For more information see NHS Breast Screening Programme.
 

Kath is pleased that, in time, women will be invited for routine breast screening from the age of...

Kath is pleased that, in time, women will be invited for routine breast screening from the age of...

Age at interview: 48
Sex: Female
Age at diagnosis: 47
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I was delighted to get an email from the Breast Cancer Care website, they've called for, somebody had sent through a petition to get women screened earlier and they're going to start phasing it in April 2008. I don't know if you've heard.

 

Here in Scotland or...

 

I don't know, throughout the UK, different areas. I don't know what the hotspots are. But women aged 47, they're starting at, 47 or 48. think it's 47.

 

OK. I haven't heard that.

 

And it'll rolled out, and it, yeah.

 

Sometimes it starts here first.

 

Yeah, OK, right. Well I don't know where it is in the UK but if you go on the government website there's, you know, their response to this petition that was raised to say why can't women be screened earlier, you know.

 

But there needs to be more awareness out there that it's not just a lump you're looking for, it's changes to the nipple, it's this, it's that. It's this thickening area, you know. Or just a feeling that there's something's wrong.
Some women said that, in order to raise awareness, they would like to see more publicity in the media about symptomless breast cancer and positive publicity about breast screening, which they felt would encourage more women to attend.
 

Patricia feels that women should be made more aware of symptomless breast cancers. It was only...

Patricia feels that women should be made more aware of symptomless breast cancers. It was only...

Age at interview: 57
Sex: Female
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One of my concerns was that if I hadn't gone for this mammogram I wouldn't have known anything because I was always told, like lots of women, that you feel for a lump. There was no lump, there was no problems with the nipple, there was nothing like that at all, I had seen absolutely no difference in my breasts at all.

 

And it's one of the things that I have been concerned about these few years on that mammograms are not to be put across just because you have a lump. I think there's not enough information about the many different cancers that are breast cancer.

 

As I say, before I went into hospital I knew nothing of this, I didn't know there was so much, so many different cancers, I had no idea about gradings of cancer, I heard the ladies talking about it, I never asked about it. It wasn't of any importance to me until later.

 

I think it [breast screening] saved my life, probably. And I also think one of the things I do, or I have expressed to others is that it's important to have mammograms at whatever age. And I did read some, there was some research which suggested we shouldn't have so many mammograms. Well in my case I'm afraid it saved my life and I think that it must be gotten across to women and to men that it's not necessarily about feeling a lump. Because I think it gives the wrong messages out. One wouldn't want to alarm people, but I think it's important. If you have the opportunity, go for a scan, a mammogram.
Having had DCIS, most women were invited for follow-up, which included an annual mammogram for five years. Many said that they were nervous or apprehensive about the first mammogram after surgery but found subsequent ones less daunting. Most felt reassured because they felt that potential breast problems would be detected and treated early. Some women who had two-yearly mammograms at follow-up said they would have preferred to have them annually.
 

Sandy will now be having annual mammograms. She is worried that the first one might be painful...

Sandy will now be having annual mammograms. She is worried that the first one might be painful...

Age at interview: 58
Sex: Female
Age at diagnosis: 58
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You mentioned you’ll now have mammograms every year.

 

Every year, yes.

 

And how do you feel about going for the next one which will be the first one after …

 

Yeah, I’m a little bit apprehensive about it. Not because of what they might find because by golly if they’re going to find something I hope they do find it, but just because the breast that’s been operated on is, it’s still a little bit lumpy and I’m just hoping it’s not going to be too painful. But it won’t stop me going. Oh no, I’ll be there and I’ll be there early for my appointment.  
Although many women were glad that routine breast screening was offered to women over 47, some questioned its benefits. Several women said that, before having DCIS, they had trusted that breast screening was a good thing because it was so widely available and strongly promoted by the NHS. However, having had DCIS and learned how poorly understood it was, they regretted having gone for breast screening and felt that screening shouldn’t be offered for something that doctors don’t know how to treat. A few women decided not to go again as they felt there was little point in finding DCIS again, which might remain harmless for many years. One of these women said she had stopped taking Hormone Replacement Therapy (HRT), which she felt might have caused her DCIS, and hoped she had now eliminated the risk of getting DCIS again.
 

Hazel doesn’t go for breast screening anymore because she feels that, if DCIS was found again,...

Hazel doesn’t go for breast screening anymore because she feels that, if DCIS was found again,...

Age at interview: 69
Sex: Female
Age at diagnosis: 57
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Since, I can’t remember which year, but certainly for many years I haven’t had another
mammogram because do I want to find ductal carcinoma in situ you again?
 
Bearing in mind that most breast cancers are found by the women themselves anyway, and bearing in mind that I know a thing or two now, what is the window of opportunity for finding something that might be significant? I prefer to take a more sort of sane and balanced view about going and looking for trouble. So either I will or I won’t, if I get a recurrence, find it in sufficient time. 
 
It depends upon the sort of cancer I may or may not get. It might be a tiny, aggressive one, which will be curtains anyway so what good would a screening have done? It might be another ductal carcinoma in situ, which will take another 30 years to get anywhere significant so, bearing in mind how old I am [laughs] does that matter? I think not.
 
So, and my philosophy is today is the day that matters. You know, be reasonably sensible about what’s life but don’t go looking for trouble and don’t think you can guard against all the uncertainties and quirks that are going to go and flip you round the ear because I’ll probably die of double pneumonia or something when it comes to it [laughs].
 

If DCIS was found again, Eileen would be unsure what to do about it, so hasn’t been for screening...

If DCIS was found again, Eileen would be unsure what to do about it, so hasn’t been for screening...

Age at interview: 62
Sex: Female
Age at diagnosis: 60
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I'm so uncertain about what I think about the DCIS diagnosis, that I don't want to put myself in the position of having DCIS diagnosed in my other breast through another mammogram screening, when I haven't made up my mind what I would do if I had the white spots diagnosed again. Because I haven't, I still have so many questions about DCIS in my mind, that I'm having to put off going to have a mammogram on my remaining breast. And I should have had this, according to my surgeon, a year after my first mammogram, when the DCIS was diagnosed in my other breast - or at least the white spots were first spotted. And that was November 2001, well if you recall I didn't have the biopsy for another four or five months.
 
So I didn't have the DCIS formally diagnosed until the March 2002. Then I had my surgery in the April, and the surgeon originally wanted me to have my other breast re-mammogrammed a year following the first mammogram, which was November 2002.
 
But that was just a few months after my major surgery so he agreed, let's leave it to the anniversary of the diagnosis, which was Spring this year. But the more I was investigating the DCIS and coming to terms with what had happened to me, the less convinced I was about the whole way in which they were approaching it. For me, the HRT might be the thing that would encourage it not to happen. It might have nothing to do with it, I just don't know. So I've had to put off [going for another mammogram]. I didn't decide I was never going to do it. I put it off until I'd got my life back together again. And actually I still haven't got my life back together. I'm still not able to do some of the things that got stopped when I got the diagnosis.
 
I do occasionally, not regularly, I do check my breast. Not in any kind of technical way, but I'm breast-aware. And I haven't actually felt anything. And I suppose in my mind all the time, whenever I do that and there isn't anything, I can see the thought going through my mind - oh it was probably the HRT that did it, and I'm not taking HRT now, so I should be okay, and I'm past the menopause and all the rest of it. But of course, the longer you get past the menopause, the more there seem to be diagnoses of breast cancer, so I'm still confused actually. 
 
I suppose the real issue is that I don't want to put myself in the position of having a diagnosis of plain and simple DCIS white spots when I'm still unconvinced that it's worth knowing. That's the point. I'm not sure yet that it's worth knowing. In terms of the screening program, well to start with I thought what's the point of the screening program? It's producing all this unnecessary suffering.
A few women who had a mastectomy for DCIS were left with mixed feelings about breast screening and said that, if DCIS was ever found in the other breast, they would choose not to have immediate surgery.
 

If Di was diagnosed with DCIS again, she would prefer not to have surgery straight away but, if...

If Di was diagnosed with DCIS again, she would prefer not to have surgery straight away but, if...

Age at interview: 52
Sex: Female
Age at diagnosis: 52
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I have thought, because I’d been told that my risk of developing DCIS in the other breast is now greater than if I hadn’t had it at all, I think three times greater, I have thought - although I think I would go for screening of the other breast - if they tell me I’ve got DCIS now I’ve understood the condition a bit more, now that I’ve demonstrated to myself that to delay six months didn’t matter if it still wasn’t invasive, the same could be true. And I also have a starting point because I know that that breast, when that breast was clear, because my other breast, it was the first mammogram, I had no idea how long that DCIS had been there. Well I will know this time.
 
So it would be my intention, unless there was very strong, there had been further research and evidence to the contrary, but if they find DCIS this time I will be able to say “Well I’ll wait and we’ll see or we’ll perhaps go for a second mammogram in a couple of years and we’ll see if things have changed much, because its likely to be very slow moving and I could afford to wait.” And I suppose I’ve just proved to myself that I could live with the uncertainty of that too because if I became too troubled by it, it would have to, I would have to reconsider. I think that would be my hope.
 
I think I would like to know if there is DCIS there because I recognise it brings a greatly increased risk of breast cancer. Now that I know that it wasn’t there on the first one I have a time scale for it, so I would be able to say I would like to wait till the next screening or “Maybe you’d like to screen me again a little bit sooner than the three years.” And that way I can find out whether it seems to be developing. And in that time maybe a little bit more will be known about its development path.
 
Or maybe more will be known so that they know it is vital to act on it immediately, in which case if they can persuade me of that then that’s fine. So I think I would go, I don’t think I would take the risk of just not knowing because I’ve been told I’ve got an increased risk of it reappearing anyway.
Although most women were happy with the information they got before going for routine breast screening, some said they would have liked more beforehand about all the possible outcomes of screening, including DCIS. This would have enabled them to make a truly informed decision about whether to attend and better prepared them for the possibility of a DCIS diagnosis. Other women, though, felt that information about DCIS before screening would be unhelpful because it could cause a lot of unnecessary anxiety.
 

Hazel would have liked a lot more information before going for breast screening about what it can...

Hazel would have liked a lot more information before going for breast screening about what it can...

Age at interview: 69
Sex: Female
Age at diagnosis: 57
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I would have liked to have seen a leaflet that set out what screening could and couldn’t do. What the areas of uncertainty were. How certain they were that mammography was a good thing, because there was evidence to draw on there and we won’t get any more evidence than the evidence that we’ve got that has been worked and re-worked which is the cause of all this controversy. I would have liked to see some basic facts about, well not necessarily in that leaflet but I would like to have been led, if I was the person and, as you’ve judged I am that sort of person, if you’re the sort of person that wants to find out more, where I could go to find out.
 
For example, the sort of stuff that’s in the report that comes out annually from the NHS Breast Screening Programme in which it sets out, year after year, they know how many recalls they’re going to get; they know how many biopsies they’re going to make; they know how many are going to get ductal carcinoma in situ. The percentages haven’t varied a great deal over the last few years. In other words, they know all this stuff. They know that inevitably there are going to be huge numbers of women recalled, many of whom will be sent home with nothing but we all know what that can mean. It doesn’t stop there for the woman because they’re not going to forget it, are they? They’re going to think about it and think about it.
 
So I would like to have seen, or been led to, a more factual rundown of what screening is. But most of all it should have started off by telling me in the first place what my risk of getting breast cancer is because if I don’t understand or don’t know or don’t think to ask, “hey hang on a minute, what is my chance of getting breast cancer?” Is it worth it? But if you don’t know what the risk is, you’re not, probably, going to think of even asking about it.
 
How I wish I had been given with my information leaflet the simple graphics that there are available which set out, at a glance in little blocks of a hundred smiley or sad faces, what screening can mean for people. In other words, you set out what are the results if you don’t go for screening and what are the results if you do go for screening. And, as I know from people who’ve been shown these, they are quite shocked at the full effect of what it can or might mean if you do go. I would say that that graphic, simple graphic presentation of what screening means, it’s not perfect because there’s areas of uncertainty within the graphics which is acknowledged because we’re not certain. We cannot separate out the benefit of screening from all the other parameters that have affected which direction breast cancer mortality is going in.
 
But I would say that for many people a visual representation rather than a whole lot of ghastly statistics, which switch people off quicker than anything, is the quickest route to describing what screening can and cannot offer people so that they can make up their minds. 
Many encouraged other women to be breast aware whether they attended for breast screening or not, something they themselves were more conscious of since their own diagnosis.
 

Jacky advises women to be breast aware and to see their GP about any breast changes instead of...

Jacky advises women to be breast aware and to see their GP about any breast changes instead of...

Age at interview: 61
Sex: Female
Age at diagnosis: 52
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Well, yes, I think I would like ladies to be very familiar with their breasts and at one time it was considered we had to feel our breast for lumps, particularly at certain times of the month. But I think the feeling on that has changed now and it isn’t a matter of a certain time of the month and not always in the monthly cycles necessarily, nor for lumps either because I didn’t have any lumps. But I want ladies to be as familiar with their breasts as they are with their face, you know.
 
And I’m going to be getting a little lump here on my face or my eyebrows need tweezing, well be like that about your breast. When you’re having a bath or a shower, just feel your breast with soapy hands, you can feel, you know. If you’re making a cup of tea, you could just sort of feel yourself around the breasts. Look in the mirror and get familiar with the shape of your breasts and if you see one is slightly small, larger or, than the other one or one looks a bit swollen or you’ve got something wrong with your nipple, it’s going inwards or there’s some puckering around your nipple, it’s probably perfectly all right but you and see your GP and let him know.
 
So get familiar with your breasts and if you notice any changes at all, don’t think, oh it’s probably the time of the month or I’ve been wearing a bra that’s too tight or anything. Anything at all that you feel that is different, go and see your doctor. And if you’re not happy with what the doctor says, you have a perfect right to insist that you have more information. If the nipple is puckering, you’ve even got a little vein there that you didn’t have before. If you feel very stiff under your arm, you feel around, that your neck is a bit stiff, not stiff but something not quite right here and the doctor just says, “oh, it’s probably just the wrong time of the month etc.” And you’re not happy with that, then you make sure that, you feel strong enough to say, “well really, doctor, I’m really feeling more concerned, I would really like to be referred to see somebody about it because it’s really worrying me” and be strong for yourself.
 
So, look after yourselves is what I’m saying, you’re the important person in your life as so you are important to your husband and your children, so they need you, so you look after yourself because you need to.
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Last reviewed July 2017.

Last updated July 2017.

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