“Anecdotal evidence”= evidence from hearsay accounts as opposed to a large number of relevant cases. No suggestion those accounts aren’t true; only one can’t necessarily go from what one hears about to “it works”. We wouldn’t think much of a doctor who said, “Take this stuff, it worked for my sister.” It may well be true that it worked for her sister. It might work for you, and others. It might not work for everyone. It might harm some people. Investigation of large samples and controls might show a reason why it works in some cases but not others, e.g. it might show that it wasn’t that but something else all those people did which worked; or maybe some people didn’t really get better, or didn’t have the same illness, or didn’t take the medicine, or took it with something else. The best way to find out is to gather as many cases as possible and see if you can spot a trend.
Studies into bc screening are showing that it produces smaller or no reduction in deaths from bc, no reduction in deaths from all causes, and higher rate of mastectomy, compared with unscreened groups where bc mortality has gone down just as much. That means screening is producing small or no effect on death rate from breast cancer. Those who don’t die of bc, still die, but of something else; it is suggested they die from the effects of bc treatments, e.g. radiotherapy. It means women treated earlier don’t live longer than they would if treated later - their survival looks longer because measured from (earlier) time of detection. That is called lead bias.
It means that most cancers found at screening fall into one of 2 groups: those affected by lead bias, who without screening would have found their own cancers the next month, year or decade, and survived after treatment to the same age as if screened; b) the overdiagnosed, who never would have developed bc and would die of something else whenever.
The conclusion is that the downward trend in deaths from bc is due not to screening but to better treatments, and women coming forward with symptoms sooner than they used to when they thought bc was a death sentence, and treatment is working well for lymph node involvement and higher grade cancers. So the evidence is challenging the view that “early detection saves lives”.
Just suppose the review announces that the evidence doesn’t show screening reduces bc death rate, what would you think then?
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This is only about screening the asymptomatic in the screening programme. Not about people in other age groups requesting screens, or diagnosing symptoms people find themselves, or those at high risk. Only the screening programme.
Anecdotes don’t make science. Overdiagnosis is found through statistics - comparing screened with unscreened populations and finding cancer incidence higher in screened populations, without corresponding decrease in advanced cancer incidence years after screening is introduced, less than hoped for reduction in deaths from breast cancer (if any) and in deaths from all causes in the two groups.
Interpretation: screening detects cancers (noninvasive and invasive) which would never progress; not all cancers kill. Combined with what is known from cervical, prostate, lung cancer (they did try screening the at-risk from lung cancer and abandoned it due to overtreatment; same for babies with neuroblastoma in Japan), other cancers and autopsy studies, it is known many people have cancerous changes in their bodies which never progress to cause harm. Cancer isn’t as simple as you think. It can grow slowly (very), clear itself, stay as it is or take off like a rocket. They don’t know enough in many cases to know “what would have happened if…”
If you are screened you risk finding these. If it was rare you might think it worth the risk. If more common you might pause. People react differently and they have a right to make up their own minds. Partly it depends on the treatment: if the treatment was a pill we’d all go for it. The Nordic Cochrane Centre, which exists for the purpose of examining all available evidence about interventions to get the best overview of effectiveness, estimates that about 50% screen-detected cancers would not have progressed. The NHS figure is 5-10%, but not in the leaflets, not in that form on their website. I’m sorry to say they don’t want women to know because they fear it would deter them from attending. It is wrong to keep back facts to get the punters in, however benign they may think their motives. Is that controversial?
It happens to be a sad and almost impossible to believe fact that the NHS is doing this. In 1997 Professor Baum resigned from the Screening Committee on the issue of telling the truth: he set up screening in 1989 and soon found unexpectedly high rates of DCIS which they didn’t know what to do with (and they are still wondering) - he wanted women told, which was only decent. Many would probably still have gone for screening, as the opinion on this thread indicates. However the Committee refused to tell women and gave this reason: if they told women about it they wouldn’t attend. They have gone on doing that ever since, although evidence that screening is not preventing deaths has mounted, and the latest leaflets, revised after pressure, are still squirmy on overdiagnosis - they neither name nor explain it and embed it in reassuring pink flowers well after the big (contested) claims that screening reduces the chance of death from bc.
Overtreatment is of the essence of screening, and should have been explained from the start: a screening test will always miss some, and catch some it shouldn’t have; the leaflet implies that these will be sorted out on recall by “further tests” - but it isn’t true, because they don’t know enough to know which are genuine cancers and which not, and if I had known that at least 850 women that year (that’s the most favourable estimate, that the NHS admits to - but not in the leaflets) would have had treatment they did not need I would not have gone. The NC estimate is 7000. Clearly a lot of women would still have gone - all I want is for women to be told so that people like me have our rights respected, you can have yours. And, surely, even if you decide it is still worth it, it should be your decision on fair evidence, and not manipulated by selective information? It is for the experts to judge whether as a programme it is cost effective.
I personally don’t have confidence in the independence of the review. It is such a political hot potato I can’t see them scrapping it. They certainly won’t throw away all those mammogram machines, and it would be hard to refuse mammograms to women asking for them after 20 years of near insistence that they have them. Just for good measure: Gordon Brown announced the age extension in 2007, but it does not appear to be evidence-based, there is good evidence that more screened women under 50 die of breast cancer than unscreened women, and it is suggested that is because intervention causes otherwise dormant cancers to spread. But it’s a votecatcher.
I'm really sorry to have gone on, but it's not easy to get your head round but it is very serious.
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The article is not about younger women. It is about breast cancer screening programmes which are mostly for 50-70s. What it said about younger people was - younger people not invited to screening have the same reduction in mortality from breast cancer as those in the screening age group. Meaning that the reduction in mortality in the older group is not due to screening, but to the same things that are reducing mortality in the younger group, i.e. better treatments, infrastructure (which is there because of screening) and awareness.
Screening is not about prevention, it does not prevent breast cancer, it only finds cancers which are already there. It aims to find them at an early stage of development, on the belief that the prospect of survival is better. The study says these comparisons show that early detection is not making a difference to survival. i.e. finding it early doesn't make people live longer.
It isn't the first study to show this. Others do. One I found dated 1998. The people who conducted this research are nothing to do with the government and not likely to be wanting to support spending cuts, and if they were, that would not be a legitimate motivation for a scientific study.
So what they are saying is that it isn't true that we're lucky our DCIS was found, because it isn't making any difference to survival to have it treated when found at screening; if we hadn't gone to screening we either would never have got cancer, or would later have found a symptom and if treated would survive just as long after as we're going to now, I mean, to die at the same time, so having it treated now instead of later isn't helping, is what they are saying.
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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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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."
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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.
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Moira Adams in the article said "There is a huge debate in the research community about the efficacy of screening – and I do not expect women in the street to understand all the nuances – but they should be made aware there is a debate." Is that even controversial: that women should be told when experts disagree over whether what is being offered is good or not? It is a fact that experts disagree on whether screening is doing more harm than good and there is a huge debate in the research community. She didn’t say people should or should not be screened. It is up to them. She said to decide on that women need the full informaiton, the risks as well as the benefits and that experts give widely differing estimates. Depending on whose figure is right it will make a big difference to some people whether the risk of screening is worth it for the benefit, and isn’t it a woman’s right to choose? See http://www.cochrane.dk/screening/index-en.htm for the other side of a two sided debate. Is it even controversial that some women if they knew that some experts estimate that 10 women are overdiagnosed for 1 life saved and that there is no evidence of a mortality benefit from screening would think twice, and don’t they have as much right as those who want screening even with that risk? As for telling women things that are worrying, do you seriously mean that people shouldn’t be told the truth if it’s not what they want to hear? Some people might want to be told “screening is good for you, trust me I’m a doctor”, they don’t have to look at the evidence, but some want to make up their own minds.
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People don’t have the choice because as things are they don't find out what theyre into until after they get a diagnosis of something which might be nothing, and then it's too late to tell people that some experts estimate 10 women are overtreated to save 1 life because most people are too scared to leave it then. They think they’re going to find out if they’ve got cancer, and that isn’t what happens. That is why they don’t do lung cancer screening, or prostate. It’s too inaccurate.
What is being argued is only for full information before screening because at the moment they don't get the full story and they think cancer=death now or later, and that is what these experts say is not true, well known in prostate and cervical. Aging people have cancerous cells in their bodies which don't cause trouble, nobody knows why only some turn nasty while others are dormant or how to predict which ones will become aggressive or when, and many dormant ones never will, they don’t even know how common they are because only since screening are they turning up lots of them, which wouldn’t ever have come to light, so they’ve got this problem of what to tell women, and I think they should be telling them just that, which is true, because the treatment is a hell of a lot to go through for nothing.
Google Sense about science Making sense of screening. You don’t have to want to know what you’re getting into with screening, but some people would rather know what it’s about. It is not that they don’t want to know if they’ve got cancer - what they don’t want is to be told they’ve got cancer when they haven’t, and there’s a good chance that will happen.
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It doesn't apply to women with risk factors or symptoms, that’s a different matter. Its about information given before screening not what you do afterwards. Once they’ve got a diagnosis people are unlikely to want to leave it, even knowing it may be a dubious one but it’s a bit late by then to tell them that, was the point. A lot of women find a cancer diagnosis and treatment very distressing; all the more if it turns out to be unnecessary or they don’t even know one way or the other. This forum is testament to the fact that a diagnosis of bc doesn’t go away. Its about warning women beforehand they could be faced with the horrendous (to some) dilemma of having to live with a cancer diagnosis that may not be real and having to decide whether to have surgery and other treatments they might not need. Some women would not want to be in that position and those experts are saying the benefits are greatly exaggerated and the risks not spelled out so women don’t know what they’re letting themselves in for, and they have a right to know.
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It said propaganda because the debate is about the screening information leaflets which they have just revised. Its not about how to deal with DCIS or about cancers women find for themselves, its about women’s right to be given the correct information about the uncertainties and risks of screening before they go. There is a risk of being treated for changes which would never cause trouble, the Nordic Cochrane Centre claim this risk is much bigger than the NHS say, and that there is no demonstrable increase in life expectancy for screened women. For the genuine cancers, mostly screening only brings forward the date of treatment without improving prognosis. More mastectomies result from screening than not screening, but we are still told we are more likely to avoid mastectomy by screening. Also invasive cancer is overdiagnosed. Not being screened is a sensible option, some female doctors don’t, they would rather avoid overtreatment but as the leaflet stands women are told that screening will save their life and likely save their breast and that is what other experts dispute. People feel differently about the risks, some will think its worth it, others wont. Its about women having the right to make that decision for themselves, on balanced information, which they are not getting.
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It is outrageous that people are not given to understand the implications of what they are undertaking when treatments are recommended to them, when these things are known by doctors to occur, but just not considered by them to be important because they assume on the person's behalf that it would not make a difference to their decision to have the treatment.
They have to realize that in some cases it may make that difference, but even where it would not, forewarned is forearmed and the distress that goes with any procedure can be reduced to the unavoidable by being told what could happen before you commit. Communication is so very very poor, so very very often, so many people's distress is compounded by doctors just not taking the patient's experience seriously.
The worst of it is, even when you ask and ask and ask every question you can think of, from every angle you can imagine, so it is obvious to them you want to know what you're letting yourself in for, you don't get told what they know, and what they know you need to know.
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In fact I've just noticed the thread on PTSD and the study which finds so many women have post traumatic stress-like symptoms even years after a bc diagnosis.
All the more reason for us to keep CCT going. What can we do?
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I've just heard that Cancer Counselling Trust is folding due to lack of funds, I'm so disappointed.
They do such important work, the NHS doesn't do it. They have skills and experience totally relevant to cancer of all kinds, which other counselling services don't have, they are just general counselling, even my hospital didn't have anyone with the right experience. I eventually went to CCT, they give 9 sessions, and they can do telephone sessions for people who can't get there. They know the sorts of problems encountered by people like us.
I know they are not the only charity to suffer in the recession, but the work they do is so important, it is irreplaceable. They are still operating till later in the year, they are still working with clients until then.
I know BCC is also a charity dependent on donations and also does excellent work, but as it is so much bigger I am wondering if they could give a donation, there might be a way to keep CCT going through the financial difficulties. Or if they take on the counsellors with their priceless skills to set up their own version under bCC.
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You've had everything that happens with real cancer, including the fact that what you have had might be real cancer, only nobody knows because that's the way it is with DCIS. And whatever your feelings are, you don't have to justify yourself, they are what they are. There are many women with DCIS and any other type of diagnosis who feel the same as you. The treatment for bc is horrible and in my view is bound to make you sad. If the treatment for bc was a pill, we'd get over it a lot quicker, but bc treatment - well, in my view it takes something away that you can't have back, and why should you be happy about that? If you can't be sad about that, when can you be sad? But surely, we try to understand when other people are sad, try to offer some comfort - so you have a right to some kindness too, with what you're going through. Others, for all their good intentions often don't understand, but you will find lots of people on here know exactly where you are coming from, it is natural to feel like you do. It will take its own good time, and probably best not to fight it just go with the feelings and let them work themselves through, and talk about it on here if you have worries - because there will always be someone who's been there...
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If you are not ready for surgery it is unethical for surgery to be carried out. It must be carried out with your informed consent. You must not feel pressured into surgery unless and until you feel it is you driving it - if you go into surgery with your present state of mind, there will be emotional repercussions afterwards. It is not going to suddenly be okay for you.
It is absolutely wrong to expect someone to commit to mutilating surgery when they are in a state of shock and not give them time to assimilate the information and feel ready to make their own decision on what to do about it, whatever it is. Your medical team should be aware of your feelings of shock and confusion, should be sensitive to this, should give you the time to discuss the details with them - and above all whether there are any reasonable alternatives, and what these are, in an unbiassed and unpressured way.
Your diagnosis is DCIS which is controversial anyway, and is not an emergency in that it may never develop into life-threatening disease, and is certainly not going to do so by next week. You have a right to put off surgery or any action until you are ready to take whatever action you decide to take. You absolutely do not have to be thinking about pleasing or not pleasing them. It is your body.
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From this I think I learn that there are two understandings of 'positivity' - a right one and a wrong one - and many people have the wrong one, and that is what Barb Ehrenreich I think is aiming at in her article. Wrong to think that mental attitude has one jot of an effect on disease process, as though by taking thought you could change the outcome, the progress, of your disease, etc. Wrong because it is unrealistic, that is to say, out of line with the truth, with reality, with the way things really are. This is 'be positive, live in cloud cuckoo land where thinking it's fine can make it fine.'
Perfectly legitimate, though, as bad fairy says (and others I think), to make the very best of what you have. That is realistic. That is saying: yes, I know exactly what's going on, and I'm not going to waste my precious time on things I can't change: I am going to be happy in spite of it, as far as humanly possible, and I am going to do all the good things I can manage to do.
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