n=1 Me, on breast screening

The Review is out. I've just scan read the summary, from The Lancet online and comment in various places.

I was a breast screening refusenik already. Now I will continue to be a breast screening refusenik. But a more confident one....

I am not immune to breast cancer. I know that. Neither am I reckless with my health. I am cross however, that overdiagnosis by breast screening has been warned about since at least 1988, and no one has ever bothered women and their pretty little heads with this.

I will continue to puzzle about my risk of getting breast cancer, as I am lower on lifestyle risk factors than many women - so it still seems to me that my chances of 'needing' the benefit from breast screening are also lower.... whilst the size of risk remains the same. For every woman's life saved - (but still to die of something else... they aren't  immortal after screening) three women (and their families) blissfully ignorantly, achieve cancer blight, and treatment, for no reason.

Come back when the specificity of the screening technology has  improved. I'll talk to you then, breast screening service. Mind you, I'll probably be too old by then... My imagined new screening test will have to be used in a randomised controlled trial + decent follow-up for me to bother.

But back to today and I am better informed, as the risk is more clearly, though still not that confidently, quantified. 

I'm still puzzled why cancer charities persist in nudging women towards screening. Their respect for their diagnosed users, concerned relatives and friends does get in my way. That is no help to me as someone who is going to chug through repeat screening decisions for decades, for this and other cancers. Screening is not the 'no brainer' most lay public assume - that all the risk is in turning down screening. It isn't. Turning up for it has risks too and that might be the decision to regret. 

What I would like charities to say is informed decision making is the MOST important thing and only then express an organisational opinion, if they must. I still wonder what they do with staff. Are they nudged to attend screening, or is there's a 'don't ask, don't tell' thing going on, or do they recommend staff make an informed choice but not the public - which would be strange, or say nothing at all to staff about screening - also strange? It is interesting. I bet they all work in 'no smoking' buildings - and did so before the law changed anyway..... so clearly they can intrude in some areas of cancer control, which otherwise would be regarded as entirely personal .... 

I've got to understand more about the connection between DCIS and OverDiagnosed cancers. I knew they were separate phenomena but thought they ran together in the OD category. The OD cancers are the ones that interest me at the moment - partly because no one knows who has them, and women will have to put up with life as a cancer patient or survivor, without knowing they needn't have if they had omitted screening. And so will the doctors. 

I am struck by the level of uncertainty the Panel express and wonder if we were deciding today whether to introduce a population based mammography screening service, would we do it? Or even hint at doing it? Of course the evidence base would include a full systematic review - which this wasn't - and some big data on cost effectiveness... but still... are the uncertainties enough to mean that we'd be looking for more data before we set up a national service?

Which leads me on to next steps. We're not finished. There are research recommendations at the end. A list of unknowns and unclears. Who knew it was quite so long?  - More reliable data wanted on overdiagnosis, better screening to sieve out the indolent OD cancers, and  work out what the hell to do with DCIS. And reassess cost effectiveness of the screening service, in light of the report.

Good idea. There will be some measurable service shrinkage, if fewer women pitch up, so there will be costs of staff redeployment or redundancy and some alteration of effectiveness. I don't think we'll get as far as 'uneconomic' in a cost reappraisal, but we might.

Like some banks, is the breast screening service just too big to fail? 

I also wonder about the 'opportunity costs' breast screening services has created. Are they small enough to be acceptable? Would a cost effectiveness review say?   

Comments

Hi Chris, Have you seen

Hi Chris, Have you seen Cancer Research UK's extensive info about it?
http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/wha...
(links at the bottom of that page to a video, infographic, blog post & more)

Breast screening

Hello Bud. I've seen some, thanks. I like the infographics. Very helpful. Everyone must go there!

Informed choice? I think not

Women have never been allowed to make an informed choice when it comes to breast and cervical screening.
The powers-that-be became aware very early on that overdiagnosis and overtreatment was a major problem - why didn't they tell us, you wonder?
Well, these programs gobble up a huge amount of funds -funds which, considering the sorry state of the NHS, could be put to better use elsewhere in the system, but I digress - in order for these programs to justify their existance, they have to be able to prove that they *work*. Had they mentioned the rate of false alarms and overtreatment with cervical/breast screening at the beginning, fewer women would have attended, which would naturally have affected their *success* rate.
But, more importantly, keeping women fearful and ignorant creates a vast number of grateful patients who wrongly believe that the program saved their life and then go on to lecture other women on the *importance* of testing. These programs thrive on scaremongering and misinformation. If you want a service to be profitable, you have to ensure that people demand it. Or in this case, that you *need* it.
I would doubt that so many women would be living in fear of these diseases if the screening programs had never been introduced.

I'm a little young for routine mammograms so I've yet to be subjected to any pressure - but if I want honest information, I'll turn to the Nordic Cochrane Institute or read what Michael Baum has to say on the subject. How can I trust information that comes from the NHS or cancer charities - these people have been deliberately withholding risk information for 25 years!