I have just turned down breast screening. Again.

I have just turned down breast screening. Again. Second time of asking; second time of polite refusal. I blogged about the first time I was asked, remarking on several things that struck me as odd and unsatisfactory.  

Some of these have changed in the interim, which is good. The Breast Screening Review reported in October 2012 for a start, plus a major re-design on the information leaflet about breast screening.

In the wider context I remain dismayed by the breast cancer charities who, by and large, are still failing to assert the paramount importance to women of making an ‘informed choice’, preferring instead the nudge to screening ‘because it might be life saving’. It might be. But it’s not that simple. They should take every chance to mention there are complexities in breast screening. Not doing so patronises and under-informs women.

Don’t do that. Really. Don’t.

In the absence of a charity geared up to take on advocating informed choice in all health screening (this website covers several salient points, but on private health screening in particular) it’s breast cancer charities’ job to deliver media comment disinterestedly and communicate the pro’s and con’s of breast screening, and quite particularly not to tell women simply to go for screening. Professionally registered Charity helpline staff wouldn’t push a women with breast cancer towards a particular treatment choice. Charity corporate sound bite should have the same respect for women and STOP 'advice' to well women, to say ‘yes’ to screening.

It’s the informed choice about breast screening which should be the aim, not shoving as many women as possible onto the bus to the screening unit.  

As before, there was a letter to call me to an appointment. The letter actually used the word ‘cancer’ which is good. As I mentioned previously, it used not to. Bizarre.

This time it suggested I had a decision to make, rather than implying that it would be best all round if I did as I was told. Last time I was most irked by their directing tone in the phrase ‘An appointment has been made for you’. This time it read ‘We invite you for NHS breast screening’ which is a whole lot better. I’m still not going, but the tone reflects an adult level of respect for me. The information was far better organised and I wasn’t asked to phone, fax (wtf?) or write to the ‘Unit’ for ‘more information’ if I wanted.

It still isn’t clear what gender the Director of Breast Screening might be but as I am not going for screening and I wouldn’t mind any gender, this isn’t a main concern to me. However, I still suspect it might matter to many women, e.g. of minority ethnicity in Ealing where I live, who might want to discuss screening with the service but may be put off if that would result in talking to a man.

The leaflet is better, but not as good as it could be. There isn’t a single sentence on lifestyle and breast cancer which, like screening, might be helpful in reducing deaths from breast cancer, but unlike screening, doesn’t have the attendant risks…… Given how many million women will get the leaflet, every few years, this is surely a missed opportunity? I agree it would have to be brief as the leaflet is about screening and added information could be a dilution - but I’d argue the description of how the leaflet was devised and who helped, is of considerably less use to recipients than one sentence of breast health promotion.

Test it! 

The leaflet suggests 1,300 women’s lives are saved by breast screening but don’t set them in context: Take your pick from:

  • There are 24,000,000 women over the age of 18 in the UK
  • There are 8,000,000 women of screening age (50-70)
  • Each year at total of c.300,000 women die of all causes in the UK
  • Of those, about 75,500 women die of cancer in the UK per year
  • Of those women about 12,000 women die of breast cancer – a number the leaflet does give.
  • And then we have the 1,300 lives that could be saved by breast screening. This number feels weirdly small against the fact there are 24 million women over 18 who are targets for seemingly constant breast screening awareness raising and advocacy.  

Back to deaths. About 12,000 deaths from breast cancer are about 4% of all deaths in women. A helpful proportion the leaflet doesn't point out.

4%.

If IPSOS/MORI would do a poll, for free – there's no interest group who'd touch the question with a bargepole - I think many women would suggest percentages closer to 40% as the proportion of women dying from breast cancer, not 4%.

If 40% might be a quantitative overestimate by me, qualitatively I’m pretty sure I’m right. I wouldn’t be the least surprised if ‘most women’ of screening age think breast cancer is responsible for, say, a quarter or more of all women's deaths. Thus, they choose screening, swallowing the ‘early diagnosis saves lives’ rhetoric, seeking safety from what they perceive as the massive risk of death, unaware of the maiming effects of overdiagnosis and how unlikely screening is to protect them from a breast cancer that would kill them – which is all screening is for in any case. Personal experience won’t inform. It may not be until a women is well past 75 that they notice their peers are, and have been, mostly dying of other things, even if epidemiological minutiae escape them.

I suspect many women (and men, for that matter) may think breast screening is offered because breast cancer is the biggest threat to women’s health. It’s not and it wasn’t. It came about through a combination of medical and social processes including but not confined to having invented a test that seemed to work -mammograms; some initial professional naivety about the benefits of screening which mostly didn’t address the risks of screening [private health care still doesn’t grasp this…..]; strong public support; and varied aspects of the politics of women’s health.

There’s also that funny psychological and perceptual muddle, peculiar to cancer of mixing diagnoses with deaths.

The cancer lobby have two goes at quantifying their problem – by diagnoses with and deaths from... I suspect the meaning of cancer diagnoses and deaths elide in many minds. It only gives pause for thought when someone is challenged directly to think about the difference between the numbers of women diagnosed with breast cancer and the numbers of women who die from it.

Most women's internal monologue won’t sift the two numbers accurately. Breast cancer, of all cancers, is the one middle aged women are most likely to get and thus is the one every other middle aged woman is likely to come across in their cohort.  I suggest that these diagnosed friends stick in women's minds as indicating their good fortune not to be one of many more imagined deaths from breast cancer in the larger population of women, unknown to them. 

I hope that gives some idea why I think the statistics on numbers of women, cancer and causes of women’s deaths are an important statistical context to add into breast screening decisions. It helped me when I first thought about it, realising I was thinking too hard about breast cancer which is only one of the many, many conditions or circumstances which might kill me. I certainly wasn't thinking about all of them equally as deeply. Why ever not? I wondered why breast cancer had assumed the particular significance it had in my mind.

And it had.

It’s now an ‘also ran’ on a list of possibilities, the screening potential to combat it is a red herring to me because of the risks of overtreatment. If the numbers diagnosed on mammography were more specific to the potentially lethal cancers I might consider having a go at it. I have relegated breast cancer to the same level of all the other cancers for which a screening is not available, which is most of them. This is hardly reckless. As I don’t drink or smoke and am normal weight and am insured against a lot of things, I clearly don’t do reckless.

Then I had another bleak thought. ‘Lives saved’ by screening is nonsense anyway. It’s really only ‘deaths delayed’. I’m not immortal.