Twenty-two women expressed interest in participating in an interview; of these, 10 did not complete an interview: 6 were deemed ineligible because they had a strong family history of breast cancer (n=1) or their cancer was not screen-detected (n=5). We were not able to make follow-up contact with 3 women who expressed interest and 1 potential participant was unavailable to interview during study recruitment phase.
Twelve women were interviewed. The interviews ranged in duration from 50 to 123 min (mean 73 min).
Table 1 reports demographic and some clinical characteristics of the participants. Participants were located in four countries where breast screening is well established: UK (6), USA (4), Canada (1) and Australia (1). Most had a university degree (11/12), and they ranged in age from 48 to 77 years. Age at diagnosis was between 44 and 74 years (mean age 58 years), and their diagnoses occurred between 2004 and 2019. Eleven out of 12 women were diagnosed as a result of participating in mammography screening, and one participant was diagnosed with DCIS as an incidental finding on routine histopathological examination of breast tissue following breast reduction surgery. The primary diagnosis was DCIS in 9 of the 12 women and (invasive) breast cancer in 3 women. They had undergone a range of treatments (table 1); two women did not have any form of surgery. Almost all of the women interviewed had found out about breast cancer overdiagnosis as a result of personal research following their diagnosis and two women found out about it after they had received treatment.
The women described diverse personal experiences relating to their diagnosis and decision-making processes, but there were also many commonalities in their stories particularly around identity, interactions with medical professionals, uncertainty about decisions made and responses from others regarding their preferred pathway. The stories of four participants (using pseudonyms) are summarised as case studies (online supplemental file 4). Five main themes were identified across the interviews: (1) Discovering overdiagnosis; (2) Am I a cancer patient or not?; (3) Resisting overtreatment; (4) Living with the unknown and (5) Downstream effects on quality of life. All participants explained how they felt the ‘standard’ approach to treatment offered by their initial teams was inflexible and the pressure that they encountered to act in the recommended and expected way.
When the women were asked to reflect on their experience of learning about overdiagnosis and overtreatment and applying that knowledge to their personal situation, most of the participants recognised that something about their personal circumstances enabled them to question their diagnosis and recommended management, and in some cases, to be able to avoid overtreatment. For example, a number of the women were employed in a profession that required them to ask questions, had relevant personal or professional networks and connections, private health insurance, or described themselves as being of a particular personality type (ie, not a shy person, ‘stroppy’, ‘more likely to challenge the opinion of a doctor than the vast majority of patients’ (Participant 8)) which enabled them to ask questions, find answers and ultimately change the way that they would have been treated.
Ten of the 12 women became aware of overdiagnosis after their diagnosis, including two who found out after they had received treatment. One was aware of it before screening mammogram, and one was unsure when she found out. Several participants elaborated, saying that while they had heard about the possibility that mammograms can detect non-lethal cancers, they developed a ‘much better understanding’ (Participant 1) when undertaking personal research following their diagnosis. Most of the women’s accounts indicated that they began their own research because they felt that they received different and often conflicting medical opinions and confusing information regarding their diagnosis. Many felt that the information that they obtained from their initial clinical teams was not sufficient for their personal needs and so this prompted them to proceed with further exploration and research independently. One participant described how,
from the beginning… it just didn’t feel right, something felt off…it’s not right how they’re communicating about it…if I ask any questions it didn’t feel right…There was something that led me to continue…asking questions, researching (Participant 6).
Some were simply curious or uncertain about their diagnosis from the outset (many had not even heard of DCIS) and were motivated to further their knowledge before agreeing to the recommended treatment. One woman said,
For a lot of women who get a diagnosis of breast cancer, to them it’s a no-brainer. Treat it, you know? Let’s get rid of it and then, then we’re ok. But… my…mental world wasn’t… composed in that way (Participant 5).
Several women named specific books, articles and clinicians that they encountered in their search for more information, that had led them to research overdiagnosis in-depth and said that these had been valuable sources of information on overdiagnosis. Finding out that there are different types of cancer was described as an ‘eye opener’ (Participant 12) and motivation to not have the recommended surgery immediately. For some, this process of getting informed became a full-time job, on which they and often their partners put in ‘a lot of work’ (Participant 1). Participant 3 initially undertook ‘typical googling’ and found the same things the doctor had told her, but
It just didn’t feel right. Then, it just kind of snowballed…the more I read the more controversy I found…like finding the idea of overdiagnosis (Participant 3).
The women’s responses to finding out about overdiagnosis and overtreatment varied, on a spectrum from feeling ‘overjoyed’ to ‘tortured’. Finding out, for some—this was where they instantly identified, they felt seen, and it was a relief,
It totally defined what I felt. It totally was validation and recognition…it was instant identification… I was overjoyed that this was being discussed in any way, because that’s what I identified with (Participant 6).
One participant felt ‘relieved’ because it confirmed that her preference to not have a mastectomy was not necessarily an overreaction. Women at this end of the spectrum reported that finding out eased some of the uncertainty they were experiencing, validated why they were feeling as they were, asking the questions they were, and verified that they were not the crazy angry irrational women that some had indicated that they were. Participant 7 felt that she had been ‘thrown a life raft’ when she discovered a blog where people were discussing overdiagnosis.
Yet a number of the women just felt shocked and sad on learning about overdiagnosis after their diagnosis and/or treatment, realising that they may have endured what they had perhaps unnecessarily:
I thought, shock. Shock. What? You know? So you mean that I’ve been told I’ve got breast cancer and yet I might not have it?…. from that point onwards (finding out about overdiagnosis) then really, I was actually tortured, I’d say, by the idea that I had been caught, unnecessarily by the screening program (Participant 5).
Several of the women in the cohort we studied expressed deep anger on finding out that they had not been informed about the possibility of overdiagnosis and overtreatment prior to breast screening. One participant only completely grasped the concept of overdiagnosis and what it possibly meant for her personal circumstances 3 years after her diagnosis and described finding out, and identifying with it, as one of the most painful experiences of her life.
I had still thought that in my case because invasive cancer had been found that my life had been saved. It took a long time to come to understand that a lot of the papers written about overdiagnosis some were only talking about invasive cancer they didn’t even include DCIS in their estimates of overdiagnosis. Then I realised that even some invasive cancer is known not to progress (Participant 11).
Two of the 6 UK participants had been invited to screening prior to information about overdiagnosis being included in screening leaflets that go with invitations to UK women for the NHS breast screen programme; for them the realisation of overdiagnosis was particularly painful, as they were months short of receiving updated patient information which cited overdiagnosis as a possible harm of mammography.
That was particularly painful…I just felt I’d been caught on the edge really of a change in policy and that actually the screening service…sent me a leaflet that they knew was not fit for purpose…so that made me extra angry (Participant 5)
Most of the women’s reports suggested that they soon became aware—once they began asking questions and learning more about their diagnosis, overdiagnosis and overtreatment—that their circumstances and experience of breast cancer were unusual. Several interconnected issues of identity were apparent in the women’s accounts of their experience. First, several women described the challenges their diagnosis posed to their sense of self because they felt well and were without symptoms prior to attending screening. Some were surprised at how quickly they were treated as a cancer patient following their diagnosis.
…And then she told me all the appointments I would need to make. And you just go right into this fast forward…you’re a cancer patient now. And you’re treated just like a cancer patient (Participant 6).
Second, some of the women expressed feeling unsure regarding how to classify themselves following their diagnosis,
I had to come to grips with was I a cancer patient or wasn’t I a cancer patient? (Participant 2)
which in some cases was only exacerbated by disagreement among treating teams on whether their case was considered cancer or not (when the diagnosis was DCIS).
I was getting more and more confused…I had one professional telling me it wasn’t cancer…and another telling me, yes, it is cancer (Participant 4).
Many said that they had difficulty adjusting to being a ‘good compliant patient’ (Participant 2) and were dismayed at the expectation to fulfil this identity, especially those women who at the time were questioning whether the recommended treatment constituted overtreatment.
Lastly, several women who found out about overdiagnosis after diagnosis or treatment, identified entirely with the possibility that they may have been overdiagnosed, and not with being a cancer patient or survivor. These participants reported feeling conflicted over whether they were a cancer patient or not, and struggled against the cancer patient identity, yet were unable to escape or deny having been significantly impacted by a cancer diagnosis. This remained the case even over time, with two of the participants instead identifying themselves as victims of the medical system.
Let’s not call this disease. I’m not, I don’t feel diseased… I don’t identify with disease or illness or cancer… survivor, any of those terms. They’re just like… it’s almost insulting, especially when you feel like you’re a victim of overdiagnosis. Then you’re, that’s a double whammy. Because now you’re a victim in a sense from the medical system…this problem is a medically made problem (Participant 6).
Another talked about not being able to relate to the generic image of cancer,
It didn’t match my experience…the kind of metaphor was this thing invading your whole life and taking you over…I’m sure that’s how it is for many people who have cancer…I never really felt the cancer was the enemy…I felt the whole medical merry-go-round was, was my enemy (Participant 5).
They felt that they could not engage with breast cancer support groups because they did not identify as a cancer patient,
You just hear about everyone’s mastectomies and the radiation treatments and … I just felt I could never go back because I didn’t identify with that (Participant 6)
I didn’t want to do any of that because I didn’t want to identify as a cancer patient … their sympathetic nice caring responses to me would not have aligned to what I needed…I didn’t want to go to those kind of meetings and then…not say how I felt (Participant 5).
All of the women described their disbelief on learning about the recommended treatment pathway after being told they had a screen-detected (or incidentally-detected, in one case) breast cancer. They perceived the scale of the surgery recommended as disproportionate to their understanding of the diagnosis they had been given which ‘might never progress’ (Participant 11), especially when they were not experiencing any symptoms.
In my head, I’m going, what is stage zero? Why would I need treatment for that? (Participant 2)
One participant, diagnosed with DCIS, commented that she did not at the time consider herself to have ‘real cancer’ so it was ‘absolutely ridiculous’ that a mastectomy was being recommended (Participant 6). Another said she had found it ‘completely ridiculous to have a mastectomy for something you don’t have yet. And you may never have. I mean…that will not kill you (DCIS) (Participant 1).
They were telling me I needed surgery for something that might never progress…I was put into that dilemma…The surgery proposed at that time was a quadrantectomy, which seemed to me like a big deal, mutilating surgery for something that might never progress so I said no (Participant 11).
Two of the women (P2 and P12) believed that having biopsies or surgery can stimulate the spread of cancer.
Most participants had encountered criticism in response to their curiosity and requests for more information to enable an informed decision about their management plan. They described the ‘uncomfortable’ exchanges (Participant 5) that they felt took place when they asked their clinicians questions about their diagnosis or overdiagnosis or challenged the advised treatment pathways. They also described a rising sense that they were taking their life in their own hands (Participant 6), with doctors acting ‘totally uncomfortable with the fact that I was now choosing to do, in her words, nothing’ (Participant 3). One participant—who had studied biochemistry—said she was asking informed and intelligent questions of her doctors and radiologist but felt she was not getting any answers, as ‘they didn’t like me asking’ (Participant 12).
I said to my husband, I don’t think I’m having that surgery. And my husband’s initial thing was like, I don’t know what you’re getting into your head. You can’t just read stuff on the internet and think that you’re better than the doctor. The doctors know best (Participant 3)
The women talked about the pressure that they encountered to act in the specified, recommended way, including from partners, friends and family members. Some women reported requests for a more conservative treatment approach were not readily accepted by medical practitioners: one woman described being told ‘you’re making a very bad decision’ when she opted not to have a mastectomy (Participant 8), another felt she was treated like she was doing something dangerous (Participant 3) or suicidal (Participant 10). As a consequence, some women sought a second opinion, and in some cases reported being pleased to find an alternative approach, with a doctor who they felt was more open to discussing different options and willing to consider evidence on overdiagnosis or more conservative care.
Our participants described situations where they felt they were laughed at, treated like ‘a mad woman’ (Participant 12), ‘negligent…foolhardy and arrogant’ (Participant 1). One participant reported being told she had ‘anger management issues’ by people on breast cancer internet forums, who felt that it was best ‘to just trust my surgeon, not Google’ (Participant 5).
At first everyone treated me like a difficult woman because I said I don’t want a mastectomy, I want monitoring please and let’s keep an eye on it and see if it develops or not because I was aware of overdiagnosis and didn’t want a mastectomy if it wasn’t absolutely necessary (Participant 12)
The clinician…was absolutely incensed that I had decided not to have a mastectomy…she says…what kind of nonsense have you been reading? What are you doing? (Participant 1)
Several participants encountered similar responses when they turned to online forums and breast cancer support groups after finding themselves unable to get the conversations that they wanted with medical professionals. However rather than finding support, they reported feeling misunderstood and isolated when they voiced their concerns about overdiagnosis and overtreatment.
It seemed like they were all doing the very aggressive treatments and…they were also kind of bullying me. And making me feel bad and saying, I wouldn’t leave it. That’s, you know, crazy. Like, I wouldn’t wait till… I want to live for my kids and …all that kind of mentality. And I just thought, I’m looking for a support group and I’m not finding any support (Participant 6).
It was clear that most of the women had at some point felt lonely and isolated as a result of questioning their diagnosis and treatment, and in their efforts to inform other women about the possibility of overdiagnosis and overtreatment,
It’s something you can’t really talk about because so many women don’t understand. You’re saying something terrible and they get quite upset. It’s also quite isolating in that I can’t mention it to women of my age because they all think it (screening)’s a good thing to do. Far be it for me to rock the boat. I’ve received too many brickbats and insults. I was only trying to help (Participant 11).
It was apparent across the interviews that a number of the women were managing feelings of self-blame and regret many years after receiving their diagnosis and/or treatment because of their knowledge of overdiagnosis and overtreatment. Some of the participants expressed regret for not being more aware or paying more attention at that time,
And yet I’d been started on this journey without my… knowledge, without my consent, without my understanding…I signed some kind of consent to have the screening performed…I kick myself for not taking enough notice of that. So I gave my consent but it wasn’t informed consent. I was cross with myself for not being better informed…I just feel a bit like I was hoodwinked and…a bit of it was my own fault, for not paying better attention (Participant 5).
They expressed regret for decisions previously made such as going for a mammogram in the first place.
I’ve got no regrets about my reaction I just wish that I hadn’t been to the screening in the first place. If I hadn’t gone for that wretched screening… … I might have got three more really good years of life not worrying about anything. In fact, once I had been to the biopsy I lived with the fear of cancer coming (Participant 12).
A few participants did however consider mammography beneficial; for instance, Participant 8 commented that she considered her life to have been saved through a routine mammogram, but at the same time felt very strongly that she had managed to avoid overtreatment and make informed management choices.
All women mentioned some step of their diagnostic and treatment pathway where they felt that they did not provide informed consent; some said that they realised in hindsight that they may have been frightened into making some decisions that they were not ready to make. Some women believed that they had been denied crucial information to enable informed consent.
One of the things that so hurts is that…(they) gave me half the information. But they knew, they knew all about the controversy and the lack of information and they still wanted more than anything to process me, not to help me (Participant 11).
Throughout the interviews, the women’s reflections on their experiences highlighted the exhausting and lonely nature of the work involved to justify why they had chosen the choices and actions taken. Some said despite having had the recommended surgery, nothing had convinced them that they actually needed it in the first place. Several others reported that they felt confident they had made the right management decisions in choosing not to have a mastectomy, for example,
I think I made…absolutely the right decision…it was frightening, ‘cause when people…who did talk to me about DCIS talked about it, they talked about it as inevitable advancing to aggressive cancer…but I think we (my partner and I) made the best decision we could make. I think if I had gone along with the mastectomy and the reconstruction…I think I’d be very, very angry now…because I’m fine (Participant 1).
However, many said they will forever be wondering if they made the right decision—‘am I the needle in the haystack?’ (Participant 11), ‘have I done the right thing…would it have been better to…have a mastectomy and move on with life and not keep thinking about it?’ (Participant 4)—even after years spent ‘digesting’ (Participant 11) the possibility of overdiagnosis. Some described the trauma and anger that they had experienced over the years,
I was beside myself with rage for several years and eventually that burns down and you just become sick of the whole thing, which now I am (Participant 11).
With the current state of knowledge, these women can never know if their decision was the right or best one, which is the nature of overdiagnosis.
And I’m sure that she thinks that I’m alive and well today because they caught it early. Whereas, I still don’t know that. I think I might be alive and well today with no further, repercussions at the moment at least, because I wasn’t really ill in the first place… I’m contributing to a misleading statistic and that I’ve reached the 5 year survival point, so everybody can cheer and that knocks that up to a success. But it’s not really a success if I was fine anyway and I was still going to be well at this point, and the NHS spent several thousand pounds curing me of something that could have been left well alone (Participant 5).
A number of the women were living with physical reminders of their experience, such as ‘really painful’ (Participant 4) pain in their breasts, disfigurement, scarring, exacerbated anxiety, lymphatic cording or the side effects of medications and early ‘super charged menopause’ (Participant 8) and the prolonged impacts of that on their quality of life. Some mentioned the stress and financial burden of bills and medical appointments, without knowing if the cancer needed to be found in the first place.
(mastectomy) affects things, affects my choices about what I wear and mastectomy bras are uncomfortable, and the whole experience has affected my travel insurance costs…it does have an impact, even after all this time…I had a bad time emotionally (Participant 5).
All participants were asked, when reflecting on their personal experience, for advice on how to improve the experience for other women considering breast screening. Their suggestions are summarised in online supplemental file 3. Responses focused on individual level factors such as clinician responsibility to elicit and prioritise patient preferences, health system factors including creating opportunity for proper discussion about the benefits and harms of screening prior to attending a screening appointment, and society level factors like influencing a societal shift in thinking about and labelling cancer.
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