The breast awareness muddle

http://www.bmj.com/cgi/doi/10.1136/bmj.g2447

New column in the BMJ. (apologies for massive horrible picture, will ask bmj to fix)

This is the campaign advert from Scottish government starring Elaine C Smith that I’ve mentioned in some press interviews today

I rather like it, as it’s plainly factual and informative – but the problem is that we don’t know whether it is more effective, or less effective, or harmful, than the wide range of advice on breast awareness already out there.

It would be absolutely possible to do a trial – just as trials have been done in the past of breast self examination teaching and prompts to self examine  – but until we acknowledge that we don’t know what is best, we will continue to miss the opportunity to find out. This does not serve women well.

Update.

The Sun have published a response to my BMJ article.

It is very disappointing as it doesn’t address the facts, is misleading, muddles the scientific arguments, and makes personal attacks.

Again:

Teaching women to do regular breast self examinations has been proven not to work. They increase the risk of unnecessary biopsy. They cannot be relied on to reduce deaths from breast cancer.

Breast ‘awareness’ (which has followed on from the trials showing self exams don’t work ) has not been put to the test, despite us knowing for 20 years that teaching women to do regular self examinations does not work. This means that there is a wide range of advice on ‘awareness’ which has not been tested. It is confusing and unhelpful to assert that this will work when we don’t know what does.

Yet the Sun claim that their campaign will save lives, continuing to try and justify their use of topless models in aid of cancer.

Then, most bizarrely, I am told that I need to check my own breasts and that it is hoped that I’d refer any symptomatic women to a breast clinic.

This misunderstanding is fairly tragic.

A woman who has SYMPTOMS (a breast change, nipple change, lump, asymmetry,  pain) no matter how it is found, needs further investigation. This is REGARDLESS of how it is found – self examination, washing in the shower, putting on clothing, whatever. Investigating SYMPTOMS has NOTHING to do with recommending breast self examination or breast awareness.

The question is whether ‘breast awareness’ will help women usefully detect changes sooner. Dr Carol Cooper is quoted as saying that “There is no breast cancer screening for young women so the only reason that group would know if they had breast cancer is by checking themselves”. In fact, in the age group of women who are invited for screening, most cancers are found by women themselves, not by the screening programme. Neither is screening a panacea. Similarly, in women who are outwith the age range for breast screening, it is the women themselves, not doctors or nurses, who find their cancers. Does this mean that regular  ‘self checking’ should be recommended ? We do not know; in fact there is evidence that it’s not finding abnormalities that are the problem – women  can we well aware of lumps but delay seeking advice. Similarly, if women only get the message that it’s lumps that are a concern, that causes problems – breast cancers that don’t appear as lumps are not as well recognised as being potentially a cancer. This means that breast ‘awareness’ would have to ensure it was usefully addressing these knowledge gaps. At the moment, we don’t know that it does.

Update

Article I wrote in the DM on why breast awareness, as currently packaged with self examination, is problematic, here.

Co-incidental editorial this month in  journal of The American College of Obstetricians and Gynecologists   on the evidence behind BSE and BSA. It’s behind a paywall, an excerpt;

 

After the Shanghai study, several randomized trials and meta-analyses were published that support the conclusion that teaching breast self-examination has no effect on breast cancer mortality.3–5 In 2009, the U.S. Preventive Services Task Force Screening for Breast Cancer Guidelines recommended against teaching breast self-examinations (Grade D).6The guidelines make note of the harms resulting from screening for breast cancer, which include “psychological harms, unnecessary imaging tests and biopsies in women without cancer, and inconvenience due to false-positive screening results.”3,6 This recommendation was met initially with resistance from the public, breast cancer organizations, and some professional societies.
Part of this resistance arises from the experiences and anecdotes of physicians and patients; a large proportion of women diagnosed with breast cancer report diagnosis through self-detection.7 Although this is true, it does not justify the promotion of self-examinations. In a large retrospective study, an equal proportion of women reported identifying their tumors “accidentally” as they did by breast self-examination. There was no difference in stage at presentation of the tumors that were detected by breast self-examination as compared with those that were accidentally identified.8
In addition to being ineffective, breast self-examination has several potential harms. Women randomized to breast self-examinations in the Shanghai trial had almost twice the number of breast biopsies as those in the control group with no difference in the number of diagnosed cancers.2 These unnecessary biopsies have been shown to increase stress levels. Women report higher levels of stress up to 3 years after false-positive breast cancer screening.9
 
Although recommendations for performing breast self-examinations have become vague, a new concept referred to as “breast self-awareness” has emerged. The newly branded “breast self-awareness” is touted as a screening method that can apply to women of all ages and risk categories.
What is breast self-awareness? The College’s patient education pamphlet defines it as “develop(ing) an understanding of how your breasts normally look and feel.”11 It explains that it is different from breast self-examinations, because it is not necessary to perform it on a monthly basis in a prescribed fashion. However, it then goes on to say that “you still can do the traditional breast self-exam. It is a good tool to develop breast self-awareness.”11 The Susan G. Komen Foundation does not give an actual definition, but provides messaging for patients that instructs them to “know what is normal for you” and notify their health care provider of any changes.12 Although this may seem to be distinctly different from the more strict message of breast self-examinations, when looking further, the difference becomes much less clear. Their web site has an entire section related to the topic, which lists all of the possible findings of a breast self-examination but deems it “breast self-awareness” instead.12 The College’s Practice Bulletin on breast cancer screening states “breast self-awareness should be encouraged and can include breast self-examination.”7 These repetitive references back to the practice of breast self-examination make it difficult to separate the two concepts.
The only conceivable benefit of breast self-examinations or “breast self-awareness” is a perceived (but inaccurate) sense of accomplishment for self-detecting cancer. Asking women to take responsibility for their own (breast) health is intended as a message of empowerment, which is hard to argue against on the surface. Providing individuals with the means to maximize health through self-efficacy has been central to public health campaigns over the past decade, especially in the areas of human immunodeficiency virus and acquired immunodeficiency virus and reproductive justice. However, when screening tools are linked not to benefit but to harm, the message of empowerment can become unfair in practice. A persistent emphasis on self-awareness provides the individual with a strong message of self-blame when cancer does occur. If the message for health is “know your body; alert your physician,” the presence of illness presumes that the body was not heeded. It implies that either the individual was not self-aware enough or that the health care provider did not address her “breast self-awareness” concerns sufficiently.
This is not to say that incidental breast findings should be ignored by patients or health care providers. To the contrary, breast symptoms must be taken as seriously as any chief complaint. As evidenced by studies showing that women report breast abnormalities even when they are not taught breast self-examinations, patients should and will continue to report abnormal findings to their health care providers.2,8 Acknowledging the importance of investigating self-reported findings is, however, different than endorsing the outlay of resources to promote a campaign of breast self-awareness, which is likely as ineffective and as harmful as breast self-examination.
To be effective, screening and detection must ultimately be able to save lives or decrease the burden of disease. In other words, screening must meaningfully change mortality from the disease for which screening is being performed. Without providing a survival benefit, screening can be harmful. “Overdetection” is defined as the detection of cases that would never have come to clinical attention without screening and is a known harm associated with breast cancer screening. Detecting cancers that would have otherwise remained indolent causes women to undergo costly and psychologically stressful treatments that have the potential to cause more harm than the cancer itself.6 In addition, overdetection ultimately condemns the patient to live a longer portion of her life with the burden of her cancer diagnosis. Given the poor performance of breast self-examination by these measures, it seems unlikely, if not impossible, that the benefits of breast self-awareness outweigh the harms.
Much like its more clearly defined predecessor, breast self-examination, breast self-awareness is being implemented and promoted without any evidence or known benefit. Given that it is intimately linked to and by some definitions overtly synonymous with breast self-examinations, breast self-awareness is at best ineffective and at worst costly and anxiety-provoking. When a clinical intervention is shown to have no benefit and cause harm, it should be abandoned. The hesitancy to recommend against breast self-examinations and the repackaging of the disproven screening tool into the new campaign of breast self-awareness is ignoring the evidence and exposing our patients to potential harm.

 

 

 

 

and from Health News Review blog http://www.healthnewsreview.org/2014/04/check-em-tuesday-should-check-the-facts/

 

 

 

 

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    […] breast cancer awareness charity. The interview was arranged in relation to an article Dr McCartney wrote for the BMJ in the first of her new weekly column for the journal, which criticised The Sun newspaper’s […]

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