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Ductal Carcinoma in Situ (DCIS)

Referral to an assessment clinic

After having a routine mammogram in the NHS Breast Screening Programme, most women receive a results letter about two weeks later. About 95 per cent of women have a normal result from their first mammogram and are invited for screening again three years later (NHS Choices). About four in every 100 women screened, though, are called back for further tests. Out of these 4 women, 1 will be found to have cancer.  About 1 in 5 women diagnosed with breast cancer through screening will actually have DCIS (NHS Breast Screening leaflet May 2017)
 
Women who are recalled after a routine mammogram are referred to an assessment clinic for more mammograms and further tests if needed. Individual women react differently to being referred to an assessment clinic. Feelings can range from not worrying at all to extreme anxiety.
 
Many women we spoke with talked about their thoughts and feelings when they were recalled after a routine mammogram. For some, being recalled caused no concerns at all and they carried on with life as normal.
 

Hilary wasn't worried because she'd been recalled after hospital tests before and nothing had...

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Hilary wasn't worried because she'd been recalled after hospital tests before and nothing had...

Age at interview: 57
Sex: Female
Age at diagnosis: 50
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About a week or so later I got a letter saying something to the effect that it wasn’t clear, that, you know, in 90% of cases it’s just sort of the imaging or whatever. I failed to see at that stage, there was a line on the bottom that said there would be a doctor available. And you know I only read ‘you’ve got to go again’. And I really didn’t think, at that stage, there was anything sinister in the recall at all. I’d had a couple of things in pregnancies with sort of tests, urine tests and blood tests and then they said, “Oh this isn’t clear,” or, “Would you go back?” and that. And so I didn’t think anything about it.
 
Got to the unit with my husband and was totally amazed at, I seemed to be greeted with a sort of a sympathetic air [laughs] as opposed to a sort of functional one. So I thought, “Nice treatment.”
 

And that was the very first time that you’d gone for a mammogram?

 

Yes. And that’s one of the reasons why I thought it was a recall and because, you know, perhaps I’ve moved or not done sort of, you know, things right and that. Absolutely, and to just sort of come out like that. I mean I don’t know how they could’ve changed that. But I think possibly the letter that came for the recall was worded in such a way as not to be too alarmist. And I’m so laid back, you know, there was no alarm at all. I think a lot of other people would have thought, “Oh my goodness, something’s wrong here.” Well I didn’t. So that caught me sort of unawares.
Several women assumed the x-rays wouldn’t be clear for technical reasons and, because they’d had no symptoms, felt they were not at risk. A few said that they hadn’t felt at all concerned because there was no history of breast cancer in their family. Less than 1 in 10 breast cancers are thought to be linked to an inherited breast cancer gene (Macmillian Cancer Relief August 2015). Our genes store the biological information we inherit from our parents. The genes most commonly linked to an increased risk of breast cancer in families are BRCA1 and BRCA2. Other genes have been identified, but they only slightly increase the risk. If a woman has one relative who was diagnosed with breast cancer at an older age, it’s not likely that the cancer is due to an inherited breast cancer gene.
 

Di didn’t worry when she was recalled because she didn’t fit any of the risk categories for...

Di didn’t worry when she was recalled because she didn’t fit any of the risk categories for...

Age at interview: 52
Sex: Female
Age at diagnosis: 52
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I was called for my first mammogram and I must say, looking back, I was incredibly naive about it. I went really out of curiosity because I’d reached the age where I knew you had screening, you had mammograms. And we had talked about them and I ended up in it innocently because I really went to find out what it was like because I felt so certain that I didn’t have any form of breast cancer.
 
I didn’t feel myself to have any of the risk factors that I knew about at that stage. I’m quite small so I knew that overweight people were slightly more at risk, there’s no family history. I had breast-fed my children and all these things I thought put me out of the risk category. And because I didn’t feel myself to have risk factors I thought I was safe from breast cancer and I realise now that was an absurd assumption. But I somehow thought that if you weren’t at risk you were safe. So I only went out of curiosity, I didn’t really go because I had considered I would be affected. And as a result I don’t think I read the screening literature particularly carefully. I just went along.
 
We then went on holiday almost immediately and I was amazed when there was a letter saying “We’ve recalled you and you’ve missed the appointment.” So I rang up and at that stage I thought well this is just a mistake, there has been some glitch with the process. Again it wasn’t going to be breast cancer. In fact I was joking with them because I have very small breasts and I just kept saying “Well they couldn’t find anything on the mammogram, that’s what it was, there wasn’t a breast there, I’m too small.”
A few women said they’d had cysts or other harmless (benign) breast conditions in the past and thought they may have been recalled because another such condition had been found. Because they weren’t anxious and didn’t think it would be anything serious, many of these women went to the breast clinic by themselves, though some did go with a friend or partner.
 

Jane thought that scarring from previous operations for benign lumps was probably the reason she...

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Jane thought that scarring from previous operations for benign lumps was probably the reason she...

Age at interview: 50
Sex: Female
Age at diagnosis: 49
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Were there any concerns over the years at all or never?

 

No concerns. Well I've had, well the DCIS started last April. I was called just for a routine mammogram because I was forty-nine so I was lucky and I had it, you know, earlier. So I had the mammogram. And then was called back. And then, yeah, that's it. Then I was called back and they said there were some sort of micro, microcal.

 

Calcifications?

 

Calcifications, yes. And they wanted to do a biopsy. So they did a biopsy. And the radiographer when she was doing it said she didn't think that it was anything. But I went back a week later and yes, there was a very small area of DCIS. But previous to that, when I was about thirty, just after I had my second baby, I had a cyst on the left breast, which I had to go into hospital and had that removed. And then about four or five years after that I had a lump in my right breast, which was benign. But it was taken out.

 

Was the cyst removed or aspirated with a syringe, or you actually had it removed surgically?

 

Yes, yes. I did, had it removed surgically yes. So no concerns as to ‘I think I'm going to get breast cancer’, just normal cysts and a benign lump. So when I got the call back from the mammogram, I thought its scar tissue. That's what I thought, it's going to be nothing, it'll just be scar tissue. That that's what it was.
Some women, though, did feel concerned, worried, panicked or frightened when they were recalled. One said she was ‘devastated’ when she received the recall letter because she’d had a lot of ill health in the past and didn’t want any more health problems. There should always be a contact number for the assessment clinic that women can call if they are particularly anxious about their appointment so they can speak to a suitably qualified member of staff, such as a breast care nurse.
 

Patricia was recalled after her second routine mammogram. She was extremely anxious and convinced...

Patricia was recalled after her second routine mammogram. She was extremely anxious and convinced...

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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I went for my first breast screening when I was 50, fortunately we were caught, I was in the right round, so I went for my first and that was clear, no problems at all.
 
And then just before Christmas, when I was 53, went for my second one, and I remember the day so vividly because we’d had morning coffee with some friends and my friend said, “Oh, we’ll go into town shopping, but we’ll…”, I said, “Well I’ve just got to go and have my mammogram.” We couldn’t find anywhere to park, so I left her in the disabled car park, and shot in for my mammogram. Had it done. Shot out. Wished everybody a merry Christmas, and thought no more about it at all.
 
And at one point over the Christmas Holiday I remember, my friend had had hers done the week before, had said, “Oh only took a week and I got my results.” And I thought, “Oh I wonder why I haven’t had my results back. Christmas Post.” And thought no more about it again. And was then booked to have a routine operation for something else, and after I came out of hospital two days later there were two letters for me, one from the ENT and one from the breast clinic calling me back. And I was just devastated. I’d had a lot of ill health. And I just couldn’t believe that something else was happening. And no, despite what anybody said, I was convinced it was going to be cancer, despite what my husband said, what my friends said.
 
So I went along that day hopeful that it wasn’t, that there was not, nothing very much. But the fact that there’d been nothing there three years previously made me think that perhaps something could be wrong.
For several women, waiting to attend the hospital appointment was an extremely worrying time and, for a few, the worst time because of the uncertainty. Not knowing whether there is a problem or how serious it might be can cause a great deal of anxiety. One woman, whose mother had had breast cancer in the past, said she felt frightened and phoned the hospital for more information, though the receptionist was unable to give her any.
 

Sue had sleepless nights and thought the worst when she was recalled because she’d had benign...

Sue had sleepless nights and thought the worst when she was recalled because she’d had benign...

Age at interview: 50
Sex: Female
Age at diagnosis: 49
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I went for the routine screening in August and went on holiday quite happy that everything was fine. However, when I came back from holiday there was a letter to say that I needed to go back because there was something that had showed on the mammogram. I was, to be honest, devastated to get the letter because I had always thought perhaps there could be a problem as I’d had a problem previously. I phoned the clinic on the Monday and they got me an appointment on the Friday. So I did only have four days, but those four days, to be honest, not knowing anything, not knowing whether they’d found a lump or what they’d found, was in my mind the worst time of the whole period.
 
When I came back from holiday unfortunately among the post was a letter saying that I had to go back for further, to see somebody because something had shown up. And it did say on the letter that it may not be nothing to worry about but they just wanted to double-check something.

 

Yeah. But you were quite worried?

 

I was very worried when I had that letter. And I must admit those few nights were really, really … I was not sleeping. I was really thinking the worst. And I presume most people do. But because I’d had a problem in that breast several years ago, I thought then that could mean that I had a problem.

 

It was in the same breast?

 

It was in the same breast, exactly where I’d the cyst before.

 

Yeah. So did you tell anyone, did you speak to your husband or to any of your friends, or did you just think I’ll wait until I’ve actually …?

 

I told people casually when I got the letter that I’d been called back. And obviously my husband and my mum knew how worried I was, and my mother-in-law. But, to the children, I just said, “Oh I’ve been called back, they just want to double check things.”
Further tests
At the hospital, more tests are carried out. These may include a clinical examination, more mammograms at different angles or with magnification, an ultrasound scan and biopsies (see Diagnostic tests: Mammogram; Ultrasound scan; Biopsy).

Many women attending the clinic will be offered a triple assessment. However, not all the tests which form the triple assessment are appropriate for everyone. The triple assessment will involve:

  • clinical breast examination
  • further mammograms and / or ultrasound scan
  • needle biopsy

The combination of tests which are carried out depends on the nature of the abnormality. In most cases, all of the tests are carried out during the same appointment. Occasionally, it may be necessary to carry out a needle biopsy on a different day. The results of a needle biopsy should be available within a week of the procedure.

Many hospitals have a ‘one stop’ breast cancer clinic, which means that all the tests and results can be given on the same day. In other hospitals some of the tests might be carried out at a later date and it may take longer for the results to come through.

 

Patricia had another mammogram and a core biopsy, and was glad the results were given on the same...

Patricia had another mammogram and a core biopsy, and was glad the results were given on the same...

Age at interview: 57
Sex: Female
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I went away on holiday and came back and there was a letter waiting for me asking me to go back to the main hospital because they may need to have another look at the x-rays, giving the details of what it could possibly be. And again I was quite positive about it and I went along to the main hospital not really knowing what to expect, just that I would probably have another mammogram. I had another mammogram and they asked me to sit for a while and wait. There was a lot of other people coming in and out who were having similar things and everything was fine. So I was quite happy.
 
What did the letter say, can you remember?

 

It just said that “you need to come back and have another mammogram,” and then it explained that this could be any, why, and that’s what I did.

 

You didn’t worry at this stage?

 

Not at all, no, no. I had no worries at all. Breast cancer hadn’t been in the family, and everybody else had had cancer of different types in both sides of the family, but that wasn’t one of them, so no I had no worries at all.

 

So you had the second mammogram, did you ask them any questions or was it all quite straight forward?

 

Well it was quite straight forward. I was a little nervous and when they wanted to do the needle biopsy, that was what worried me. And I thought it’ll be all right, it’ll be benign or something. Not thinking very much about it at all.

 

No. And what did the needle biopsy involve?

 

Well I had to have my breast clamped. But this, and that was very painful and it was a needle that, I mean very kind and explained that it had to go in to the site where they thought there was a problem. And it was the first time it went in, he wasn’t happy and they had to go in again. So that was a bit distressing really. And I had to have a bit of a you know wait around at that point, it was distressing I have to say, but I have to say that’s what needed to be done. I think if I’d have been told what was going to happen I probably wouldn’t, I’d have been even more nervous, but it had to be done and that was that.

 

And they did the core biopsy, did they give you the results there and then on the same day?

 

Yes. And I saw the consultant on the same day. And the breast cancer nurse, it all happened within I would say half an hour or three quarters of an hour.

 

Very quickly then?

 

Yes. Yes, which was wonderful.
Most women said that doctors told them while they were carrying out the tests why these needed to be done. Some women said they wished the recall letter had told them more about what would happen. One said she wasn’t worried about being recalled but didn’t expect to have all the tests done on the day of the recall appointment.
 

Hilary was shocked to have a biopsy and felt that more information in the recall letter might...

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Hilary was shocked to have a biopsy and felt that more information in the recall letter might...

Age at interview: 57
Sex: Female
Age at diagnosis: 50
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I was called in to have these other mammograms and a radiologist or radiographer explained that these little white bits were micro-calcifications that could be the start, the early start of cancer and they’d have to take some biopsies. They were like a staple sort of thing, a little, like a thing that pressed, which was very uncomfortable. I mean, I just had to have it done but they took a quite a lot of those and I wasn’t anticipating that on that day at all.
 
And then they said that they would send them off to the lab and that, you know, if the follow up was necessary, no, they actually said they would do follow up, would I like to go to one hospital they mentioned or another hospital? And I sort of, you know, you’ve just been told that you’ve got, possibly got breast cancer and then sort of having to decide which hospital to go to. And my husband and I talked about it for a few moments, it was as much as that, that we had to sort of make a decision and chose the one hospital which I was very pleased in retrospect that we chose it, but then we had a little bit of time outside while something was sorted and I shed a tear. I remember, just one. I didn't cry a lot. I thought, you know, “Sod it,” you know, “I hadn’t really expected this.”
 
I think the things that I found most sort of surprising was the initial, the recall back and being told then that there were, you know, spots, which were usually the signs of early cancer. I hadn’t anticipated that that afternoon at all. And later the emotional response to the reconstruction.
 
And when you had the letter, the recall letter, you didn’t think anything about it?
 
No.
 
And do you feel that that letter could’ve been written differently, or so as not to cause alarm, it was the right kind of letter? Or do you feel that there should be more information about DCIS for women who go for mammograms?
 
Well I think so. I think that the recall letter, myself, I would’ve found, perhaps I would’ve started to look at it more closely. I didn’t see what it was and whatever. But maybe perhaps it would’ve given me more worries. But if there’d been a sort of sentence on there saying that in some instances micro-calcifications are picked up on a mammogram which, although not always, need treatment, in some cases do as they can progress towards DCIS you know. Then I think I would’ve thought, well perhaps I could be in that category and I might’ve worried about it. But I think I would’ve then started to look at what DCIS was.
 
Before you went?
 
Before I went. And I came back and I was absolutely sort of amazed.
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Last reviewed July 2017.

Last updated July 2017.

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