Breast Screening

DCIS: views on breast screening

Women we spoke with who had ductal carcinoma in situ (DCIS) talked about their views on breast screening. None of them had heard of DCIS before being diagnosed and felt that they might have been more prepared for the actual diagnosis if they had.

Some women with DCIS were glad they went for breast screening and recommended it to others. One woman said that, if she hadn't had a mammogram, her DCIS might have become invasive breast cancer and stressed that early detection often meant a greater chance of successful recovery. She found follow-up appointments reassuring because potential breast problems would be found at an early stage.

Her cancer was found early because of screening and she says that early detection means a greater...

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Age at interview: 61

Sex: Female

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It was fortunate timing for me because it was just at a very early stage, you know, and the timing couldn't have been better for me to have that mammogram. Because they obviously do areas and they'd obviously, the area, they'd come to where I live and if I'd lived somewhere else they may, I may not have been called for another 18 months or something. So the timing was very good because they caught the in situ so early that it was just beginning. The chalk deposits were just beginning to form, which is an early way that the cancer manifests itself. And they, I couldn't have had a better time. It was visible but not dangerous so I just think that somebody, somewhere, was really looking after me.

Well, I would say to them [other women], "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.

Other women agreed that they would have never known there was a problem until much later, had they not gone for screening. Several women felt that breast screening had saved their lives.

Says that if she hadn't gone for screening she wouldn't have known there was a problem until much...

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Age at interview: 52

Sex: Female

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I felt all the time no you know, we've caught this in time, well in time and that is the advantage again of screening, if you do pick up something early like that, you know you've got a, you know, a hundred percent chance of being fine because it's been caught so early.

Yes because that, there were absolutely no symptoms?

No, because I was actually quite worried, because I said to the surgeon, "Should I have detected this?" And he said "There is absolutely no way you could have detected this because there is no lump." And he did say to me that you know "By the time a lump has occurred" he said "that might have taken two years to occur."

So he said "You are so far ahead of the game, you know," he said "really," he said "you're not lucky," but he said "you're also very lucky that the mammogram picked it up when it did, because it's enabled us to be one jump ahead."

Feels that women should realise that breast cancer can be found without symptoms such as lumps.

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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.

A 48-year-old woman who had DCIS recommended that younger women have both mammograms and ultrasound scans because mammograms can be less reliable in women under 50 (see 'Breast screening and younger women'). She believed that the discomfort should not deter women from having mammograms because it doesn't last long and could be caused by a benign condition. Another young woman said that she had a mammogram at the age of 43 only because she was randomly invited to take part in medical research on breast screening. She was found to have DCIS and pointed out that, although she hadn't felt any breast symptoms, she had been feeling tired. Her experience led her to believe that breast screening should be available to women from the age of 40 (see 'Breast screening and younger women').

She recommends ultrasound scans for younger women and says that the discomfort of mammograms shouldn't deter women.

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Age at interview: 48

Sex: Female

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Don't have one [mammogram] on it's own, have an ultrasound as well. I mean people often tell me "oh, I wouldn't want a mammogram because they hurt" and the answer to that is "they may hurt because you have a cyst, so go and try and get a mammogram in the first half of your menstrual cycle when there is less likely to be cyst".

And the other thing is that, yes it can be very uncomfortable, but childbirth is even more uncomfortable and we manage that. You know, we are women, we can cope with pain and unlike childbirth, having a mammogram only lasts a few seconds, that bit when they really squash that thing together, it lasts only a few minutes. It is something we can cope with.

Had no symptoms except tiredness before her diagnosis and feels that breast screening should be available to younger women.

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Age at interview: 52

Sex: Female

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But, as I say, the thing that concerned, well worried me most, was the fact that I didn't have a lump and all the publicity you see for breast cancer telling you to look for a lump, but there's other symptoms as well. Because the tiredness must have been one of the symptoms and it made me think "well, how many other people since then are walking about that, not as lucky as me, and had that letter through the post". That must happen quite often. So I think someone up there was looking down on me at the time.

If someone was thinking about going for a mammogram, but wasn't sure about going, because some people don't attend for screening, what would you say to them?

I would tell them to go, definitely, because if it hadn't have been for me going, I wouldn't be here now, would I? You know, I wouldn't be talking [laughs] to you across the table today, this minute. If I had of just, which I very nearly did, said "oh, I won't bother", and I would have signed my own death sentence wouldn't I. Because I had, yes, I had ... I think it should be done for younger women because, as I say I was only, I was 43, I think it should be done from the age of 40, screening.

Several women said that the NHS breast screening leaflet they'd received hadn't mentioned DCIS. DCIS is now mentioned in the current leaflet as it accounts for one in five cancers (twenty per cent) found through breast screening (NHS Breast Screening Programme– Helping you decide leaflet July 2013). Unlike invasive breast cancer, DCIS rarely causes symptoms. Most women knew about breast symptoms, such as lumps, and felt that women should be informed that symptomless breast cancers can also occur.

Says that screening saved her life and she recommended it to other women.

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Age at interview: 57

Sex: Female

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So in your case you would really strongly recommend that women have mammograms because you wouldn't have found yours?

Yes I do, I think it 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 mammogram.

Several women said that, before having DCIS, they'd never questioned that breast screening was a good thing. One said she had trusted the medical profession because they were going to so much trouble to make breast screening widely available. Once she'd had DCIS and found out how poorly understood it was, she regretted having gone for breast screening and felt that screening shouldn't be offered for something that doctors don't know how to treat. She decided not to go again as she felt there was little point in finding DCIS again, now that she knew it could remain harmless for many years. She believed that most women went for screening because it was accepted as the social norm and promoted as responsible behaviour. She felt that women should be told more about the benefits and risks of breast screening so they could make a properly informed decision about whether to attend. She also expressed concerns about the emotional, psychological and financial costs of cancer screening generally.

Had assumed that breast screening was a good thing until her DCIS diagnosis and decided not to...

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Age at interview: 69

Sex: Female

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Well, they sent me the usual leaflet that they send out. I know it's been modified since but, to be honest, not very much. No, because I think I had trust in the notion that they wouldn't be doing this if it wasn't any good. It seemed too preposterous to think that they would summons millions of women to give them a mammogram if there wasn't some benefit in doing it.

In retrospect, of course, I think quite differently about these things because I am one of the screens where something was found.

Certainly because it was responsible. It's there; they're offering it. They wouldn't go to all this trouble if they didn't know what they were doing. And I think trust comes into it more than anything else; trust in the profession.

And since then I haven't, well 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 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 thirty years to get anywhere significant so, bearing in mind how old I am [laughing] does that matter? I think not.

Discusses different kinds of cancer screening and their costs.

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Age at interview: 69

Sex: Female

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I think each type of screening has to be looked at very thoroughly in its own context and there's no 2 types of screening that are the same. Angela Raffles described cervical screening so clearly and I think, when you say cervical screening the thing that pops into my head is the economic aspect of it. I can't remember all the figures but millions of women years, certainly to save a life without any doubt, but all those other grades of cancer that have worried the wits out of thousands of women. Again the downside of screening, without adequate initial information so that a woman at the outset can make up her mind whether to go or not.

That's a whole different set of parameters to judge. And when you think of the money and effort that's been spent on all that, yes, it's produced benefit but how often do we look at the, both the personal cost and the financial cost of doing that? Is it the best of way of tackling that problem? I don't know the answers but I know what the questions are. And then again, I think prostate cancer is the one that intrigues me more than anything because when I think of the shortcomings of the PSA test and the terrible dilemmas it can put both patients and doctors in when they find, let's say a slightly elevated, what does it mean? We don't really know what it means so you've got a whole series of uncertainties and decisions to make which I think is a horrible thing to impose on men.

And I wish they would look at the economics of it [breast screening], too, because, you know, '57 million I think it is a year, for what? I'm not quite sure, it's a bit scary. It could be better spent, I feel.

Several women were shocked to be diagnosed with DCIS and to have a mastectomy for such an early form of breast cancer. Many felt that women attending for breast screening should be told that detecting breast cancer early doesn't always mean less drastic surgery. Some women questioned whether any surgery for DCIS was necessary when it might never develop into invasive breast cancer. A woman who had a mastectomy for DCIS was left with mixed feelings about breast screening and said that she would choose not to have immediate surgery if DCIS was ever found in her other breast. She had attended breast screening completely unaware that she could be at risk and felt that the NHS breast screening leaflet didn't cater for the affected minority of women who ended up with a breast cancer diagnosis, and should mention risk factors for breast cancer.

Discovered that detecting breast cancer early may not mean less drastic surgery.

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Age at interview: 62

Sex: Female

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So it does raise questions about whether it's [breast screening] really a good thing, because what I discovered, I'm jumping around here, but after I got the diagnosis I went away and rushed around trying to understand about this strange DCIS, to discover that in the medical world it wasn't free from controversy about what to do about it, because it's thought that some, maybe a lot of DCIS, never develops into breast cancer proper anyway. And so the shock of having a mastectomy proposed for some early form of breast cancer, that might not even develop into breast cancer anyway, was just adding to it all.

Says she would not have surgery immediately if she had DCIS again.

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Age at interview: 52

Sex: Female

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But 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.

But I think now I would make that choice for the other breast but I wouldn't necessarily go down the path of instant surgery, in fact I'm sure I'd wait and see whether a new treatment by then had been developed or whether my risk was very small.

Some women with DCIS were unsure about going for breast screening again because they didn't want to be faced with the uncertainties associated with DCIS. After having a mastectomy, one of these women had delayed having the remaining breast screened because she hadn't decided what she would do if faced with another DCIS diagnosis. She had been told that she needed a mastectomy but her doctors couldn't find any DCIS in the breast they'd removed. She was uncertain about going for screening again because she felt that breast screening had caused her unnecessary suffering and she hadn't yet got her life back to normal after her diagnosis. She had stopped taking Hormone replacement therapy (HRT), which she felt might have caused her DCIS, and wondered whether she had now got rid of the risk of getting DCIS again.

After her mastectomy, doctors could find no DCIS in the breast they'd removed.

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Age at interview: 62

Sex: Female

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And then finally I went with my sister, and the surgeon said he was embarrassed because they still didn't have the results. We said, 'why?', And he said 'they can't find what they're looking for'. Even though they've done, now, considerably more analysis than they ever would. And I said 'what are they looking for?' And he said 'DCIS', and they couldn't find any DCIS. They couldn't find any DCIS in my breast that they had removed. I subsequently had two, possibly three, quite long sessions with the pathologist, looking at my own cells under the microscope, trying to understand why it was that they said they'd found DCIS in the original biopsy, and not being able to find any DCIS in the breast they removed. I'm still not really a hundred percent sure that I understood it, but I can't think of any other explanation than they removed from my breast in the biopsy the only DCIS cells there were in my whole breast. They were two tiny spots of less than one millimetre. And I had my whole breast and five lymph nodes removed for that.

Which is why I'm deeply concerned about being faced with this white spots diagnosis on my other breast, when even when I was diagnosed with threatening, high grade, wide extensive DCIS, in the end, when they removed my breast, they couldn't find it at all.

Feels unsure about having her remaining breast screened and wondered how far she had eliminated...

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Age at interview: 62

Sex: Female

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Now I'm on calcium tablets. Well why couldn't I have been taking these all the time and maybe I'd have never had DCIS in the first place? The other significance about that is, remind me and I'll come back to the environmental factors, let me finish this thing on HRT. Because I'm not convinced that my DCIS would have turned into invasive cancer, and I've removed this HRT risk, I'm hoping, myself, and it can only be a hope, that I'm no more at risk now than anybody else was.

In your own mind, what would be the pros and the cons in terms of going for a mammogram?

The con? Forgiving the pun but the contrary arguments against it, which is why I'm not doing it, is that if they find white spots, more DCIS, I still haven't made up my own mind about what I think about this diagnosis. And so I don't want to put myself in the position of having to take a decision about it, until I know what I think about it.

And against that argument, what thoughts are going through your mind about why should...?

Well might DCIS, not only DCIS be developing there? And might it be DCIS that will invade, and might there be an invasive lump developing that I'm not aware of? Though 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.

Women whose DCIS hadn't shown up on mammograms or ultrasound scans hesitated to have more such tests at their post-treatment check-ups. After her mastectomy, one woman sometimes wondered whether she should have her other breast removed since she doubted the ability of diagnostic tests to detect breast cancers. Despite their doubts, these women encouraged others to go for breast screening.

Feels wary because her Paget's disease and DCIS didn't show up on mammogram but advises women to go for screening.

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Age at interview: 48

Sex: Female

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But I mean I was always quite vigilant anyway, but then I would never have been able to pick this up because it was, I mean it didn't show up on a mammogram. It didn't show on an ultrasound. I mean and that kind of gave me a bit of a problem for quite a long time because I felt "well why am I going back for my check-ups because you can't tell anyway". So, getting my head round that was quite difficult.

But now I have a problem now with going back for my, like I went back for my year check in September, having an ultrasound, a mammogram, coming away being told that I am clear because how do I know, because I was clear the first time. So, I do have a bit of a problem with that.

I mean I do think people should go for screening. But at the moment I need someone to say to me, I think they class Paget's, well the DCIS is like pre-cancer rather than a cancer, so eventually it will show up on a mammogram but not until it's more invasive. So, I think they need to, I think maybe the professionals need to find a way of actually detecting it, you know, before it becomes invasive. And I would just advise people to do their check-ups and to, you know, go for their mammograms and ultrasounds.

See more about experiences of DCIS on our DCIS website.

Last reviewed March 2016.

Last updated March 2016.