Has 'risk' ever been part of popular discourse on breast cancer screening?

I’m pretty interested in screening in general and cancer screening in particular.

Informed choice is my ‘thing’. There’s stuff afoot. The current review of breast screening will capture the current risk/benefit statistics which will help inform choice, though I’m not sure many women know they may have been making ill informed ones previously. I don’t know what the outcome of the review will be, beyond the basic one of improving details in the information women receive with their invitation to screening. If the review finds the risks are bigger than previously assumed, and the benefits smaller, there will be a spot of bother with the shit/fan interface but we’ll have to wait and see on that.

The styling of the information is being tackled elsewhere – in the ‘Informed Choice About Cancer Screening’ consultation. The first question on it is “What is your opinion of the new approach to developing information about NHS Cancer Screening Programmes?” to which my current drafted reply is “It is alarming that it has taken to 2012 to identify proper explanation of benefits and harms as the driver for information provision on cancer screening.”

I’m pretty sure most women don’t have any idea that there are harms attached to breast screening, beyond the obvious like pain or extra exposure to X ray. The risk that bothers me is over diagnosis and getting treatment I may not need – surgery that ‘saves’ my life, lumbers me with a cancer diagnosis and all that weight on my mind, when my life was never in danger. 

I’ve been wondering when discussion of ‘risk’ disappeared – or maybe it was never there in the first place?  I haven’t come to any conclusion, but here’s the story so far. 

I cottoned on to risks inherent in any screening programme because I struggled with the egregious PSA test for eight years at The Prostate Cancer Charity. Advocacy for screening is simple. Screening, unfortunately, isn’t. The PSA test throws all the problems into relief. Breast screening was, maybe it still is, wedged in many PSA activists’ minds as proof of sex discrimination in favour of women. Silly, but true. I hope they know better now. Women were herded to breast screening by public acclaim for it + incomplete information, much like men, herded to mystified GPs by public acclaim for the PSA test + incomplete information.

‘Early diagnosis is key’ is a wonderful driver to screening. What could possibly go wrong? How about this?  PSA tests mean some men are made pointlessly incontinent or impotent for life by treatment they didn’t need and breast screening means some women have mastectomies or radiotherapy they didn’t need either. Wrong enough for you?

Advocacy for informed consent, which is a far more important concept on which to model screening choices and a host of other healthy behaviours, is what I hoped I had been doing at The Prostate Cancer Charity. I was caricatured in some parts as a man hater and probably regarded as a posturing pseudo intellectual in others, for not simply suggesting that we advise every man to demand regular PSA tests. Perversely, as it might have appeared to some, I was wondering how many men, ostensibly well until they discovered the PSA test, would wind up maimed by treatment they didn’t need for a cancer that wouldn’t ever do them any harm. The fact that these same men may all have been cheerily certain that their life was now saved is no consolation. There is no bliss in conniving in someone else’s ignorance.

Anyway – I became aware of the general principles of screening and the inherent risks in screening - because of the PSA test. I knew to look for information when I reached breast screening age.

And now the red mist descends.

I did not become aware of the risks of breast screening because I spotted any PR, health messaging, leaflets or media stories from breast cancer charities. Thanks for nothing, girls. What awareness were you actually raising with all your exhortations to young women to fanny about in pink during Breast Cancer Awareness Month?  

I did not become aware of the risks of breast screening because they were a regular lively topic of conversation amongst female friends of my age, either. Few women over 50 are obviously struggling to balance the pros and cons of breast screening through discussion and shared experience. Not their fault, not my fault. Most women have no idea we need to know more about breast screening than ‘just do it’. There’s an informed discussion to be had. (That is a ‘service’ I now provide)

I did not become aware of ‘risk’ as a result of a well informed and informing health media either– which probably leads back to the breast cancer charities and their media interests, now I think about it. You’d have to be pretty engaged in health issues to know ‘risk’ is a bloody good question in screening. The personal story of someone with cancer is engaging and reader friendly, so let them have the space to say ‘go for screening’. Who on earth would be insensitive enough to stop and quiz them on the risks of the screening they advocate? No one, so it never happens. An important issue shelved and the pro-screening narrative trundles on, reinforced, armourplated and oppressive.   

I looked back to the origins of the breast screening programme in the UK, seeking for discussion on risk. I wondered if it might be a new thing – all this stuff on over diagnosis. No, it isn’t.

Although there had been local programmes in various places in the decade and a half previously, the decision to support mammography as a national programme was taken after the Forrest Report of 1987. The breast screening scheme covered England and Wales by April 1990.

What did the key Forrest report, the one that changed policy in 1988, say on risks of breast screening? Not a lot.

On page 14

“2.17 The potential hazards of screening are firstly that ionising radiation used in mammography might itself induce some breast cancers; secondly, that unnecessary biopsy operations are performed in women with false positive results; and thirdly, that women might undergo unnecessary procedures for the diagnosis and treatment of cancer which might not have entered an invasive phase during their lifetime. In addition there are psychological consequences which must be considered.”

Ionising radiation is then addressed and shortly put to one side. The second and third points were run together as overdiagnosis – which then became both a problem that does not seem to exist, as well as one that might appear given more time. After the ambiguity of the comments you’d think over diagnosis would be reserved as a ‘need to know more’ issue. It wasn’t and I can’t see it in chapter 10, either, where research questions are collated. It doesn’t appear at all in a ‘cost to patients’ estimate, on page 55. Psychologcial factors do, but not the major physical risks that concern me, and would concern other women if they knew about them -  the “unnecessary procedures for the diagnosis and treatment of cancer which might not have entered an invasive phase during their lifetime”.

The report extruded another mention, on page 24.

It comments that the radiation risk from mammography is “minute” in relation to its potential benefits in women aged 50 and over. But mammography “carries a potential disadvantage of detecting early lesions that may never prove life threatening and would not normally present  for treatment but this is mainly limited to the initial prevalence screen and is of less importance in subsequent screens.”

In the BMJ [volume 297 15 October 1988 page 971] Petr Skrabanek, from Dublin wrote a piece making a case against breast screening. Of note, I quote:   “Overdiagnosis implies overtreatment, unnecessary biopsies, unnecessary mastectomies, and widespread anxiety and fear. The advocates of screening should assess the harm by stating how many mammograms need to be taken and biopsies performed for one life saved. Wright calculated that if a woman subjected to operation for benign disease is considered to be harmed by screening the ratio of harm to benefit is 62 to 1. [gives as ref:  Wright CJ. Breast cancer screening: A different look at the evidence. Surgery 1986;100:594-8.] I have argued elsewhere that screening healthy people without informing them about the magnitude of inherent risks of screening is ethically unjustifiable.”

“screening healthy people without informing them about the magnitude of inherent risks of screening is ethically unjustifiable”. That was nearly 25 years ago. This issue vanished from view and, save for the occasional glimpse was never seen again in lay circles. We’ve finally got back to airing it in public, in 2012. I wonder how that will go? I await the conclusion of the breast screening review with interest.

Will women making breast screening decisions, finally, catch up with their human right to self determination?