Abstract
Objectives
To explore women's understandings of having a mastectomy for screen-detected ductal carcinoma in situ (DCIS).
Setting
Participants recruited throughout the United Kingdom and interviewed in their own homes by an anthropologist.
Methods
Qualitative study using semi-structured interviews and thematic analysis. Thirty-five women with screen-detected DCIS were interviewed, of whom twenty had a mastectomy.
Results
A qualitative thematic analysis of women's understandings of having a mastectomy for DCIS identified four key themes: understandings of routine breast screening; uncertainty about DCIS and its natural progression; uncertainty about whether a mastectomy is justified for DCIS; information gaps and treatment decisions. Women were often concerned that a mastectomy for screen-detected DCIS was a ‘drastic’ treatment for an asymptomatic, precancerous condition of which they had been previously unaware. Some questioned why they were treated with such urgency, even suspecting that their clinicians were responding to targets.
Conclusion
Given the uncertainties about DCIS and its complexity, it is important that women have the information they need to make treatment decisions. Better information about the uncertainties and the rationale for using mastectomy as a treatment may help women to make better informed choices and feel more comfortable about their decisions.
Introduction
DCIS is a heterogeneous condition and its treatment depends on its extent and grade. It usually affects a localized area of the breast and most women are given a wide local excision (WLE). If the area of DCIS is large or affects more than one area of the breast, a mastectomy is recommended. Despite the excellent prognosis following treatment, uncertainties exist about the natural progression of DCIS, optimal treatment, and the effects on women's health-related quality-of-life (HRQoL). 3 Analysis of rates of DCIS and invasive disease 4 suggests that more than 60% of DCIS cases detected in screening programmes have the potential to progress to invasive cancer. The UK, Australia and New Zealand (UK/ANZ) DCIS trial found that women with DCIS were much less likely to develop invasive disease if they received radiotherapy after surgery. Among patients who were treated with radiotherapy after surgery, the risk of new invasive cancer in the same breast fell by almost 70 percent. Of those treated with surgery alone, the ten-year recurrence rate was above 30%, similar to that for small invasive cancers. 5 This suggests that treating DCIS is prudent. At present it is not possible to determine with certainty which cases will progress to invasive disease, so all cases are treated and there will be some over-diagnosis and over-treatment. 6 In the UK, 30% of women diagnosed with screen-detected DCIS are treated by mastectomy rather than by WLE because of the multifocal nature of the disease. 7
Most women have never heard of DCIS before their own diagnosis 8 or before attending routine breast screening. 9 They are often shocked at the diagnosis because they were asymptomatic before screening and unaware that the condition existed. 10 Women find DCIS a complex and confusing diagnosis because of the different terms used to describe it (precancerous, pre-invasive, non-invasive), because its natural progression is poorly understood by clinicians, and because treatments such as mastectomy are offered for a precancerous condition that may remain harmless. 11 Health professionals find it challenging to explain DCIS to patients and the terminology they use varies considerably. 12
Women's confusion and the lack of information about DCIS has been highlighted in several studies in the last decade as well as more recently. 13 15 Women reported that information about DCIS was often basic, offered only during the first consultation, or was only covered by one among a variety of leaflets which dealt mainly with invasive breast cancer. 10 Previous research has stressed the need for clear verbal and written information about the nature of DCIS and its treatment, while acknowledging the uncertainties and limited evidence about treatment effectiveness. 11 It has been shown that women who have a mastectomy for DCIS have similar morbidity to those with invasive breast cancer. 16 Our study adds to existing literature by using in-depth interviews to explore how women who have a mastectomy for screen-detected DCIS make sense of their diagnosis and treatment options.
Methods
With multicentre research ethics committee (MREC) approval, we invited women across the UK to be interviewed about their experiences of screen-detected DCIS. Potential participants were given information packs via support groups, charities and screening units. Women willing to take part contacted one of the researchers (SP).
The data reported in this paper were collected as part of two larger studies of 48 women's experiences of breast screening and 35 women's experiences of DCIS. These two projects were conducted separately but highlighted striking similarities in the concerns women had about screen-detected DCIS. The first project aimed to explore women's experiences of breast screening and the second examined their experiences of screen-detected DCIS. Most participants were interviewed in 2008 and a few in 2003-4.
Thirty-five women were recruited using a range of recruitment strategies and sources aiming for a diverse maximum variation sample of screen-detected DCIS, including various social-class and ethnic backgrounds, those who had been diagnosed several years earlier, those who were currently making treatment decisions, women treated by WLE and those by mastectomy. We aimed to include people whose experience might be considered ‘typical’ as well as those with more unusual experiences. 17 Interviewing continued until new interviews no longer added to the analytic categories, which were then judged to be sufficiently complete. 18
The interviews were conducted by one of the authors (SP), an anthropologist unconnected with participants’ hospital care, and took place in women's homes in 2003-4 and 2008. Interviews were audio recorded with the participant's consent and professionally transcribed. Interviews lasted 1-3 hours.
Two researchers (SP and JE) read and reread the data and constructed a coding frame. N6 (a qualitative data-indexing package) facilitated the coding and analysis of data and SP and JE regularly discussed the coding and interpretation of results.
Age, diagnosis and treatment data for the 20 women who had mastectomy for DCIS
Women's experiences of DCIS: full list of analyses available at www.healthtalkonline.org
Results
Twenty of the 35 women with screen-detected DCIS had a mastectomy, the rest had a WLE. We report a qualitative thematic analysis of these women's accounts. We identified four key themes, which will be discussed in turn and illustrated by extracts from the interviews:
understandings of routine breast screening; uncertainty about DCIS and its natural progression; uncertainty about whether a mastectomy is justified for DCIS; information gaps and treatment decisions.
Understandings of routine breast screening
Women were concerned about the information they received before routine breast screening. None had heard of DCIS before their own diagnosis or were aware that early, symptomless breast cancers existed-information they considered important. The UK National Health Service (NHS) information leaflet women were sent with their screening invitation in 2003-4 and 2008 did not mention DCIS as a possible outcome of screening. This leaflet has now been revised. It now mentions DCIS very briefly on page ten of a twelve page leaflet. Having had no symptoms, women were usually shocked to be diagnosed. They had all attended screening for reassurance that their breasts were healthy; some believed that early detection of breast conditions would mean less treatment. Hearing that they would need a mastectomy was very distressing.
‘It was just too big to be able to cut out enough tissue to remove it all safely, so they would have to remove my whole breast. Well, this was a profound shock because all the information and literature I had ever seen which had encouraged me obediently to go every three years for my mammogram, the screening programme, was catch it early and you'll have less surgery, less treatment. And this was the exact opposite … If somebody's gone to screening with no symptoms whatsoever, this is a profound shock.’
[Interview 24; aged 60]
This contrasted with the 15 women who needed a WLE, many of whom said they were pleased the DCIS had been ‘caught early’ and that they did not need to lose their breast.
A few of the women who had a mastectomy questioned the value of routine mammography if it could lead to the diagnosis of a condition that might not progress. Two women we interviewed no longer attended for routine breast screening and some others said they would have liked to have known more about the benefits and risks of routine breast screening before attending.
Uncertainty about DCIS and its natural progression
Women often found DCIS a confusing diagnosis because of the different terms used to describe it and the uncertainty about its natural progression. Making decisions about treatment was particularly difficult because clinicians could not predict the likelihood of their DCIS becoming invasive disease. Women wanted to know more about the different grades of DCIS and whether high-grade DCIS was more likely to develop into invasive breast cancer.
‘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 lotofDCIS, neverdevelopsintobreastcancerproperanyway. 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.’
[Interview 24; aged 60]
Uncertainty about whether a mastectomy is justified for DCIS
Women were often very shocked and upset to hear they would need a mastectomy and found this hard to square with their lack of symptoms. After the initial shock, a few felt that having a mastectomy would give them reassurance or peace of mind that all the DCIS had been removed and about recurrence. Others, though, were reluctant to have a mastectomy for a condition that might never progress. None of those we interviewed had refused the treatment, though some questioned whether there were any alternatives to surgery, including changes to their diet. One woman delayed having a mastectomy for six months while she researched the condition and looked for alternatives to surgery. Reading conflicting opinions among health professionals, including those who questioned the need for a mastectomy for DCIS, contributed to her anxiety. With hindsight, many women said they would have liked more information about DCIS and the treatment options. Some women also said they would have liked specific information about why DCIS patients are given different treatments (e.g. WLE, mastectomy, radiotherapy, hormone therapy), why doctors have different approaches to treating the same condition, and the need for a mastectomy for DCIS. Some described the benefits of seeing their pathology report because they wanted more detailed information about their particular case, including why their treatment was recommended.
Women sometimes wondered why DCIS had to be treated so soon after diagnosis and suspected that their treatment may have been driven by a need to meet government targets. This was particularly the case if women felt they had not been given enough time to think about having a mastectomy and come to terms with the shock of their diagnosis. With hindsight, several women who had had a mastectomy said that, had they known more about DCIS before surgery, they might have waited a bit longer before having surgery. This would have given them time to weigh up all the possible treatment options before making a decision.
‘The whole breast would have to be removed and he could offer the operation tomorrow or next week … I really felt quite pushed … I really felt that I would have liked a bit more time … It's not like you could say, like if it was a tumour you'd be able to say-I think you'd know more and certainly you'd have, because you'd have felt the lump yourself more than likely, you'd have had more time to adjust and I think that is a big thing. It felt like a whirlwind. We called it ‘fast-tracking’.’
[Interview 29; aged 51]
A few women felt that a mastectomy for DCIS was over-treatment and questioned why women with multifocal DCIS could not be monitored instead. One of these women suggested that monitoring those who declined surgery might help doctors learn more about the natural progression of DCIS. In two cases, the pathology results indicated that there was less DCIS than the doctors had suspected. This led to a concern about whether they could have been treated by WLE instead of mastectomy. Some women said they were offered immediate breast reconstruction and wondered if it was easier, emotionally and psycho-logically, to accept a mastectomy for DCIS if they had immediate reconstruction.
Information gaps and treatment decisions
Women who questioned the need for a mastectomy for DCIS found that the answers and information they needed were often not known, making treatment decisions extremely difficult. A woman who delayed having a mastectomy for six months, while she researched the condition and tried to find out about the likelihood of DCIS developing into invasive breast cancer, described the difficulty:
‘The evidence wasn't there. No one could actually answer my questions, even when I went back for the subsequent appointment I had loads and loads of questions but they could not be answered. And that made it even more appalling to think I was going to have a mastectomy when I couldn't make a clear choice because the answers that I needed-about how long would it take for this to develop, how dangerous are thesecells, what is exactly the spread in my breast-none of those could be answered. They could only say, “We have found what we've found. There may be more but we can't tell until we've removed your breast and we can't tell whether it's invasive until we've removed your breast.” And that's appalling and in fact I refused at that point to go ahead. I felt I'd been well railroaded into a surgical procedure and so I said I would wait … At the time I was talking about this in terms of, I was talking about mastectomy in terms of a mutilation and I couldn't see it as, I objected to it being called a treatment. To me it wasn't a treatment, it was almost the opposite.’
[Interview 32; aged 52]
When there were no clear margins after a wide local excision, treatment decision-making was, again, difficult and distressing. Those who were given a choice between a second breast conserving operation or mastectomy said they would have liked more information about the benefits and risks of WLE versus mastectomy.
‘I went to see the consultant and again they found that the margins weren't clear. They told me I needed to go away and decide what I would like them to do next. I could either have another operation to try and get clear margins or I could have a mastectomy. And it was up to me what I decided … It was a very difficult time. It was almost the worst time I would say because it was making a decision and you were choosing something that you didn't really want to choose because none of the options were really what you wanted at all. If I'd just had another piece of the breast removed I would have radiotherapy, so that was another consideration that I had to think about.’
[Interview 4; aged 50]
In the absence of sufficient factual information, one woman said the decision she finally made was hugely influenced by talking with another woman who had had DCIS in the past. Some women felt that treatment decisions would have been easier had they been diagnosed with invasive breast cancer rather than DCIS.
‘I think if I was found to have DCIS in the other breast, I would be devastated because I think you've got to make more decisions if you've got DCIS. If it's a lump, you know it's got to go. If it's DCIS, do you wait and see whether it becomes cancer because, you know, as far as I'm aware nobody really knows do they, whether it will or not. And do you then go through yet another traumatic mastectomy, reconstruction? That bothers me more than the fact that I may have breast cancer because then you've got to make decisions.’
[Interview 7; aged 53]
Women's information needs when having a mastectomy for DCIS
Discussion
This study explored the experiences of women with screen-detected DCIS, a complex condition because its natural progression is uncertain. While the very existence of the condition was a surprise, the news that they would have to consider a mastectomy was both counter-intuitive and shocking. How could such radical treatment be needed when they had no symptoms, when the disease was not invasive, and when they had attended breast screening for reassurance that all was well?
Women were appalled to discover that DCIS is a relatively common condition among the abnormalities detected by screening yet they had never heard of it and the NHS information leaflet accompanying their breast screening invitation letter did not mention it. The NHS leaflet was recently revised because of criticism that the information given to women before routine breast screening was inadequate as it did not discuss the harms or limitations of routine mammography.20, 21 DCIS is now mentioned in this leaflet but only briefly.
The concerns of women who were recommended a mastectomy for DCIS were different from those who had a WLE because a mastectomy was seen as a drastic treatment for a precancerous condition that may remain harmless. Data collected in 2003-4 and in 2008 indicate that women's concerns about having a mastectomy for screen-detected DCIS and their information needs had not changed in the intervening years. Agreeing to a mastectomy brought with it further choices about possible breast and nipple reconstruction, leading some women to have several operations, not just one. The uncertainty around the natural history and optimum treatment of DCIS, together with a lack of information, and the perception that there was little time to decide, caused some women considerable distress and made it difficult for them to make informed choices about treatment.
The limitations of our study are that participants were interviewed several months (in some cases years) after their diagnosis and so there may be some recall bias. However, the accounts are very detailed and many of the reported experiences feature in several accounts, reinforcing the findings. Although women from black and minority ethnic backgrounds are included in the wider study, of the 20 who had mastectomy all were from white British backgrounds. As a qualitative sample we do not claim numerical representation for the results (hence we do not present numbers in the results) but do intend to represent a wide range of experiences, which we believe we have achieved.
Information seeking is one of the principal ways people cope when facing an adverse situation. 22 Searching for information helps reduce depression and anxiety in people who are experiencing a potentially life-threatening event. 23 When information is lacking or confusing, or is not adequately communicated by health professionals, people can feel more anxious and unsupported. The timing of information provision is also important. At the time of diagnosis women with breast cancer may be unable to absorb much verbal information. 24 It is therefore important that information is given in written and verbal form, is consistent, accessible and, where needed, available in other languages. Reliable websites could also be recommended.
With routine mammography becoming more widely available in the UK, it is increasingly important that women in the broadened target age range are made aware that symptomless breast cancers exist, about the possibility of a DCIS diagnosis as a result of breast screening, that some DCIS may need to be treated by mastectomy and the rationale for this treatment. Women diagnosed with DCIS should also be given written information about what DCIS is, the uncertainties about its natural progression, the different ways of treating it, including why a mastectomy might be needed, the benefits and risks of WLE versus mastectomy, why lymph nodes might need to be removed, and where to find more information and support, including from other women who have been through similar experiences. Those wishing to find out more about the experiences of other women could be directed to breast cancer charities as well as to the DCIS section of www.healthtalkonline.org.
Conclusion
Resources for women with DCIS
Footnotes
Acknowledgements
We thank the women we interviewed who contributed to the Healthtalkonline DCIS website: 
, and members of our Advisory Panel who helped define the sample and with recruitment. We are grateful for support for the study from National Health Service Cancer Screening Programmes.
. SP drafted the paper; all authors contributed to subsequent drafts and the final version.