Informed consent when attending breast screening

"I’m afraid that sending a letter, sending a reminder and then making a telephone call to women are tantamount to being harangued, even bullied, although obviously NOT literally “banging down their door”.

I think that’s a bit dramatic.

Does this happen? I am only going by my sisters experience.
She received a letter inviting her for breast screening the same as you get a letter and leaflet inviting you for cervical screening.There was no bullying .

I have been googling and it seems that most of the research disagreeing with screening and the effects of it comes from alternative web sites and most of the research for breast screening comes from science based medicine websites.And some of the information given is false and does not give the whole research information found.

You give the full information to women…but what is that full information and how much of it is accurate…it seems it depends on what information you want to believe.

CzechMate, As already mentioned above there HAS already been changes in the new leaflet which now says that you could potentially be over treated and it is up to women to attend for screening, so i dont know where your arguement is going?.

You say “I’m afraid that sending a letter, sending a reminder and then making a telephone call to women are tantamount to being harangued, even bullied,”
That is a ridiculas statement , and one which is trying to undermine the benefits of screening to try to SAVE peoples lives, people have a voice,use it, say NO THANKS not interested! the NHS would save a lot of money!

What is the point of this arguement when the issue has already been addressed??

In my opinion People should think theirselves extreamly lucky that they are offered FREE screening and FREE treatment in the first place, some countries are not afforded that luxury,but as always there will be those who think they know best and knock the medical profession usealy those that promote ALT , you have a choice,take it or leave it!

No doubt the only people who will ultimately procecute the NHS is those that go on to die because of thier misjudged ignorance about the seriousness of Breast cancer
This is a free county you have the right to say NO!

Linda

The discussion about screening, and informed consent, is an important debate and it is important that we can discuss it on the forum in a calm and polite manner.

Please make sure that you respect each other’s views and make your points politely and respectfully. Debate and discussion are good - and it is fine for people to disagree with each other but you must remain polite.

Remember our community guidelines (breastcancercare.org.uk/forum/community-guidelines-please-read-t25601.html) and think carefully about the language you’re using, and how this might impact on other forum members (both those who post and those who read without posting).

Thank you
Leah

Does it indicate on the leaflet that there is disagreement among the professionals about their statistics?

What does evidence-based mean?

What if you are the one woman whose life was saved! To be honest I am so grateful to my breast unit. 3 yrs ago I had dcis and had a lumpectomy no further treatment just yearly mammograms and a examinations at clinic. On 17th sept I went for last examination surgeon examined me thoroughly and sent me on my merry way, by end of November I found a lump and when i had mx they found 2 tumours 1 that didn’t show on mamagram. I am so gratefully for the mammogram. I found the lump, i had a choice whether to go to Dr or not, I had a choice to have mx or not, I also signed a concent for chemo so that was my choice.
I had to cancel a smear test last year and I had phone calls and letter after letter reminding me I hadn’t been. Is that threatening behaviour? I don’t think so, I think it’s the nhs doing it’s job, and I dread to think how much my mx, treatment, wig, and care has cost the nhs, and I don’t think they would throw money away like that for no reason.

Czechmate

im not sure where about you are but we most certainly dont phone up our patients to chase them up… they get a letter inviting them and its up to them to make an appointment to attend or not… no bullying, harassing, haranguing involved.

i had cancer BEFORE i worked in breast screening and it wasnt detected through screening as i was 37 at the time, but i CHOSE to work in this area because of both my personal experience and my professional experience.

before i worked in breast screening i worked in family planning and was involved in the cervical screening programme and also worked in prostate assessment so yes you could say im pro screening… but i spent years at university training to be a nurse and im able to see both the pros and cons of screening… i was merely explaining that nobody is forced to have any screening, treatment or investigation that they do not wish to have.

im not sure what the English leaflets say but the Scottish one has just been changed recently.

blue dragon the the phone calls for a smear test are not the norm… again my experience of this is only in scotland and it may be completely different south of the border… but the appointments are sent out centrally reminding you to make an appointment, they send reminder to the GP if you dont attend and after 3 reminders you are discharged… however the GP may decide to call you or send lots of letters, so the GP may pester you but the screening service doesnt.

Lulu x

Hi,
You can find the English Breast Screening Leaflet here.

cancerscreening.nhs.uk/breastscreen/publications/nhsbsp.pdf

It looks entirely informative to me and doesnt try to hide any of the issues mentioned on the thread.

Linda

thanks Linda

its pretty similar to the scottish one and think it tells you the pros and cons of screening a way most people would understand.

Lxx

deleted

Somebody said women get the choice, someone else said they’re forced. What was claimed was they’re influenced; that’s not force but it’s not free choice either. The leaflet isn’t evidence-based if it ignores reliable research that disagrees with it. Nordic Cochrane are serious researchers, so is the US Preventive Services Task Force, amongst others, not “alternative” or cranky. The leaflet doesn’t even mention disagreement among researchers. It gives its own statistics which are the most favourable, and other researchers have said they are plain wrong, by a big factor, which if correct means screening is more of a gamble than it is presented to be. It doesn’t use the word overdiagnosis, or explain it; it calls DCIS an early form of cancer which implies it will get advanced, which is exactly what does not happen in however many cases, depending on what the true statistics really are which they do not really know. If you don’t know about it from elsewhere you won’t get that from the leaflet, but you won’t know you haven’t got it because why would you doubt it. It doesn’t say invasive cancers are overdiagnosed as well. Nordic Cochrane says screening produces 20% more mastectomies, while the leaflet makes screening look like the best way to avoid mastectomy.

Someone said, what if you are one whose life is saved? Okay, but the claim is it is unlikely, and what if you are overtreated, there may be 10 of those for every one saved? If you are overtreated your abnormalities never would have gone further; that is what overtreated means. Most of the rest would have, but would still have the same life expectancy if treated later - screening hasn’t changed it. It is about women’s right to know the full facts.

Snow White
Thanks. I re-read the Cochrane information this week and was going to mention it. Anyway, here is a link should anyone care to read this article:
http//www.cochrane.dk/screening/mammography-leaflet.pdf

CM

And here is a link to cancer research from Jan 2011.

cancerhelp.org.uk/type/breast-cancer/about/screening/mammograms-in-breast-screening

The cochrane article says

“If 2000 women are screened regularly for 10 years, one will benefit
from the screening, as she will avoid dying from breast cancer.”

the cancer research article 2011 says

“for every 400 women screened over a 10 year period one less women dies from breast cancer.”

even if the leaflet stated that there was some disagreement between experts I still know that if I was invited for screening I still would go.

you obviously can not put every piece of research and every piece of evidence for and against screening in one leaflet.
And I am sure that experts/scientists/researchers disagree about lots of things all the time.

Melxx

No-one is trying to persuade anyone not to go to screening. The point is that a leaflet should include correct information that enables people to assess the risks and benefits. If it doesn’t do that it isn’t good enough. Nobody is aksing for a leaflet to provide the ins and outs of every bit of research that’s ever been done. The difference in estimates of benefit and risk is so great that it would make a difference to some people whether they want to take that risk for that chance of benefit. Also, Cancer Research UK is as I understand it providing the research that the NHS is quoting, so if you refer to them you are going to get those figures.

The NHS says 1 overdiagnosis for two lives saved; Nordic Cochrane says 1 life saved for 10 overdiagnosed. That is 20 times higher. It might not matter to some people but it would matter to others if they knew. Some people would have treatment just in case, and some people would rather not have treatment unless pretty sure they really need it. Nobody should be persuading anybody one way or the other, they should be given the information to make up their own minds.

Here’s what Prof K McPherson an epidemiologist of Oxford University says in the BMJ, after saying that the 400 figure is “far too low” and the leaflet is “misleading.” He says “The leaflet also completely fails to pay enough attention to harm, although the chance of overdiagnosis may be higher than that of preventing death. General Medical Council guidelines say both should be communicated; women have a right to know.”

Hi,
The leaflet says
“About eight out of 1,000 women screened will be found to have breast cancer.Of these, two will be told they have an early form of cancer called ductal carcinoma in situ (DCIS). We don’t know which cases of DCIS will become harmful so we offer these women treatment.”

So… as we “dont know” which DCIS will become harmfull(and how could we?) i think the leaflet has explained the situation in an acceptable way that most people will understand, people can then make a decision as to whether or not they want any treatment.

It would be nice to see some evidence of any DCIS or invasive cancer that has been treated that was overdiagnosed ? but of course thats impossible isnt it,as how on earth can anyone ever possibly know what the outcome would have been?

The leaflet also says

“Screening can find cancers which are treated but which may not otherwise have been found during your lifetime.”

That for me also seems pretty straighforward wording and is not trying to hide any information or facts.

Whatever figures are correct and the experts disagree, it is all estimates at the end of the day, Breast Screening and Cervical screening saves lives ,the earlier a “cancer” is picked up the more chance a woman has of surviving the desease.

The leaflet also makes it pretty clear that,

“This leaflet tells you about screening for breast cancer. It aims to help you “choose whether or not” you take part in the NHS Breast Screening Programme. Whether or not you go for breast screening, you should speak to your GP straightaway if you are worried about a breast problem.”

I think its pretty clear by the above wording that it is also a womans “choice” whether she takes part in screening or not, there is no pressure,bullying,forceing ect as some have said.
So as i said before in the thread, i think both of the leaflets provide the facts about breast screening in a straightforward way which most people will understand.

Including on the leaflets that xxx people will be over diagnosed and subsequently overtreated (when they realy have no solid evidence of that) will only undermine the benefits of screening and may potencialy put people off attending which in turn will see cancer rates rising resulting in even more deaths which might have been saved.

Screenings not perfect but its a hell of a lot better than taking a gamble with your life.

Linda

Linda, I think you have got right to the heart of the Informed Choice debate with your observation:

“Including on the leaflets that xxx people will be over diagnosed and subsequently overtreated (when they realy have no solid evidence of that) will only undermine the benefits of screening and may potencialy put people off attending”

That is the dilemma for the screening programme. That gives them 2 main options:

  1. is to say - we want women to come for screening and are concerned that telling them about over-treatment could potentially deter people from coming. We think screening is most important, so we will hold back the information about over-treatment issues.

  2. is to say - we want women to come for screening and are concerned that telling them about over-treatment has the potential to deter people from coming. We think informed choice is most important so we will give the information so that women can weight it all up and we hope they will decide to come for screening.

The danger for the screening service with option 2 is that numbers might drop. The danger with 1 is that when people find out that information has been excluded some of them will be angry - which also has the potential for further consequences.

There can be - and are - all sorts of debates about just how useful screening is, but I do think that you have put your finger on the key point here.

Eliza

Other researchers are saying the statistics given in the leaflet are wrong; if that claim is correct, then women are not informed, they’re misinformed.

These leaflets are new; up until now they have not even said this much. But even now it starts with “This leaflet aims to help you choose…” That’s a plain statement of intent. The question is whether it succeeds in doing that. The claim is that it doesn’t - because, for example, next, it says, “Breast screening reduces deaths from breast cancer.” Almost next it says “Regular screening prevents deaths from breast cancer.” But this claim is itself contested by the other research which has failed to find a reduction in deaths resulting from screening.

It says, “Screening can find cancer early, before you know it’s there. The earlier breast cancer is found, the better your chance of surviving it.” But it doesn’t say that some cancerous changes found are never going to develop. When it does mention DCIS, it calls it “an early form of cancer”. That might make some people think it is bound to become advanced cancer unless it is treated. And it doesn’t tell us that invasive cancer is subject to overtreatment too.

Then it says, “If a breast cancer is found early, you are less likely to have a mastectomy”. This is another claim that other researchers dispute. The Nordic Cochrane finding is that a screened population has 20% more mastectomies than a non-screened population; the NHS figures for 2008/9 are 26% of invasive and 30% of noninvasive screen-detected cancers were treated with mastectomy. More of the “early form of cancer” treated with mastectomy than the supposedly “more advanced” form.

In any case, it is wrong to rely on a leaflet over such important and complicated issues. People screening for genetic disease, for HIV, for breast cancer genes, get counselling before they are tested.

About the dilemma re. telling the truth and potentially dropping attendance, you have hit the nail on the head, except when was it ever okay for doctors not to tell the truth? They used not to tell the truth, but it wasn’t okay then and it isn’t okay now and when it’s about population screening of people with no symptoms, all the more do they have to give the correct information, the doubts, and the downsides, before people get involved, not start drip-feeding bits of information after they’ve got a problem. There is no dilemma here; you can’t treat people like that. I don’t know anyone who’d say, “Oh they didn’t tell me the truth for my own good so that’s all right then.”

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