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Informed consent when attending breast screening

57 REPLIES 57
katytc
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Re: Informed consent when attending breast screening

bump

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Re: Informed consent when attending breast screening

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."

stressy_messy
Member

Re: Informed consent when attending breast screening

.....

Eliza
Member

Re: Informed consent when attending breast screening

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

cornishgirl
Member

Re: Informed consent when attending breast screening

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

Guest user
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Re: Informed consent when attending breast screening

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."

stressy_messy
Member

Re: Informed consent when attending breast screening

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

http://www.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

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Re: Informed consent when attending breast screening

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

Guest user
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Re: Informed consent when attending breast screening

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.

stressy_messy
Member

Re: Informed consent when attending breast screening

deleted

Lulu34
Member

Re: Informed consent when attending breast screening

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

cornishgirl
Member

Re: Informed consent when attending breast screening

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

http://www.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

Lulu34
Member

Re: Informed consent when attending breast screening

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

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Re: Informed consent when attending breast screening

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.

Guest user
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Re: Informed consent when attending breast screening

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

What does evidence-based mean?

Guest user
Not applicable

Re: Informed consent when attending breast screening

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 (http://www.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

cornishgirl
Member

Re: Informed consent when attending breast screening

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

stressy_messy
Member

Re: 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.

Guest user
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Re: Informed consent when attending breast screening

Hello

We seem, again, to have veered away from the topic of informed consent.

"we dont come banging down their door"

We? Someone involved in the screening programme is on the Forums and might give a rather subjective view, in my opinion.
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".

Back to business - I opened this thread to highlight a real issue with uninformed consent BEFORE screening, not after screening, not after diagnosis, but before women are put in a situation where they could well end up between a rock and a hard place. A few people seem to have grasped the problem. BCC know the problem and I personally think it should become a subject for their campaigns but I doubt it will, neither for breast screening nor for treatment risks.
I suppose someone may eventually successfully prosecute a case against the NHS. Then we'll see how fast leaflets can be changed, assuming general breast screening hasn't been axed by then.
CM

cornishgirl
Member

Re: Informed consent when attending breast screening

Screening works FACT, therefore people have a choice take it or leave it, Screening saves lives that is not in doubt, when it comes to the number of lives saved by breast screening it been been put at anywhere from around 3001 to 14002 lives saved in England each year.
Also experts disagree about the number of women who receive surgery, radiotherapy and/or hormone therapy for DCIS unnecessarily.
Quote CRUK
"A woman must ask herself to what extent is she willing to risk unnecessary breast surgery, radiotherapy and all that comes with that, for the chance of having her life saved.
In the meantime we must be extremely wary of prematurely undermining the existing breast screening programme. If women start to turn away from breast screening in their droves now, there may be no going back. We could find ourselves in a situation where in five years time a consensus is reached that there is a clear benefit to breast screening but that it is no longer viable due to low public confidence in the programme."

http://www.cancerscreening.nhs.uk/breastscreen/save-lives.html

http://www.cancerscreening.nhs.uk/breastscreen/journal-medical-screening.pdf

Nobody forces women to go for screening, and nobody forces women to have treatment its their choice, if women want to take chances with thier lives then thats up to them ,they must live with the potencial consequences its SIMPLE!

Linda

Lulu34
Member

Re: Informed consent when attending breast screening

snowwhite its giving all the relevant information because its gets checked over by people who work for the breast screening service from all the centres and from a panel of lay members so that they are happy that it has all the information in it.

there has been changes in the new leaflet which now does mention that you could potentially be over treated and it is up to women to attend for screening... we dont come banging down their door and dragging them off if they dont want then that is their own choice.

even if DCIS or cancer is found and a patient chooses to do nothing about this then it is still their own choice not to be treated.... although breast cancer is very treatable.

screening can fine some very tiny invasive cancers that you just wouldnt pick up any other way..... we recently had a couple of women who had a 3mm and a 1mm invasive cancer in their dcis.

although many of you dont believe that screening works looking at the statistics shows it does improve life expectancy.... yes a lot more people are diagnosed but less people die since screening was introduced.... see the table 1.4
http://info.cancerresearchuk.org/cancerstats/types/breast/incidence/

i think for the majority they would prefer to be screened if they thought it could potentially save their life in the longer term... but there definitely is something in that living in blissful ignorance can mean better quality of life without worry.

perhaps one day we will be able to get our head around breast cancer in the same way we do with heart disease.... how many out there take statins and antihypertensives but they dont worry all the time that they will have a heart attack or a stroke even though a number of them will.... many wont either so perhaps we are seen to over treat everything....

and maybe with time as more and more of us live with breast cancer it maybe come a less scary diagnosis too.

Lx

Guest user
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Re: Informed consent when attending breast screening

How do you know it's giving you all the relevant information?

stressy_messy
Member

Re: Informed consent when attending breast screening

here is a link to the leaflet,I found it to be very informative and it gives the upsides and the downsides and states the risks.it is not persuasive and does give choice.I really don't see what the fuss is all about.

http://www.healthscotland.com/uploads/documents/15270-BreastScreeni
ngWhatYouNeedToKnow.pdf

Sorry that link didn't work heres another one

http://www.healthscotland.com/topics/health-topics/screening/breast.aspx

scroll down to breast screening what you need to know and you can download the leaflet

Melx

Guest user
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Re: Informed consent when attending breast screening

I have had great support from the SBCC in a very personal way when I most needed it.

As a four year misdiagnosed breast cancer lady, I came into contact with SBCC soon after surgery and the horrible package that helps you to survive – chemotherapy and radiotherapy. I needed every support I could find, including psychological, emotional, Bristol Cancer Care, Maggie’s Centres. To help put something back into such support for others, I want to explain my experience to and share with as many organisations as possible in order that what happened to me never happens again. SBCC is one of these organisations.

As far as screening goes, it was screening that saved my life. Women have a choice - they either go for screening or they don't but they should be given full information of the risks as well as the benefits. They also have a choice with their treatment. I personally know a lady who has DCIS. She has chosen to go down the mistletoe route. This could be classed as risky but it’s her choice.

A lot of how we think is based on our own experience and each and every one of us is unique and has different stories to tell.

Wishing you all well. I don't post very often these days.

Jeannie

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Re: Informed consent when attending breast screening

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.

cherub
Member

Re: Informed consent when attending breast screening

I looked at the link to the piece in The Herald and I don't think it's strictly true to say the SBCC are high profile - highly vocal maybe, but they suffer from a lack of members. Any talk of them being high profile probably comes from having Margo MacDonald as their patron who of course is very well known in Scottish politics.I actually paid to join and when I got the newsletter and previous minutes it was pretty apparent that there had been problems within their committee. They also couldn't get the spelling of my name and address correct on the stuff they sent out to me. It left me feeling they were amateurs, so I've never bothered to get involved. I just saw their banner at my local in patients department when I was attending the breast clinic. I've also been told by a BC expert that they don't get taken that seriously - the person who told me that just said "well, they appear to be very nice ladies when they turn up to breast cancer things, but.........." To be truthful, I can't be bothered with things that turn out to be just "wimmins groups". I prefer the wider picture. I also thought some of the study they sent me when I joined was very ambiguous and misleading and I felt parts of it could confuse and scare some women.

stressy_messy
Member

Re: Informed consent when attending breast screening

here is some information on the lives saved and those that are overdiagnosed.

http://info.cancerresearchuk.org/news/archive/pressrelease/2010-03-31-more-lives-saved-from-breast-s...

This is an article from the herald regarding the leaflet

http://www.heraldscotland.com/news/health/breast-cancer-leaflet-row-1.1089101

"The leaflet does tell patients that mammograms can find DCIS, but it adds: “We don’t know which cases of DCIS will become harmful so we offer treatment to all these women"

"Carol Colquhoun, national co-coordinator for screening programmes with NHS Health Scotland, said: “Scotland’s breast cancer organisations welcomed the new NHS Health Scotland leaflet introduced today and the Scottish Breast Cancer Campaign was consulted on its development."

“The information given in the leaflet is clear and seeks to answer questions to enable women to make an informed decision about going for screening".

Not to sure what I think about SBCC and Moira Adams.

Melx

Guest user
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Re: Informed consent when attending breast screening

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.

Lulu34
Member

Re: Informed consent when attending breast screening

well interesting the day after posting about about not being able to research DCIS i had a conversation at work with one of the radiologists who said there is going to be a research trial (not an RCT but an observational trial) looking at people with low grade DCIS who are willing to just be monitored without having any interventions.

im not sure how many people they will get to join up or how many they need for the research to be of value but it will be interesting to see what the outcome is.... but one of my worries was that even though on biopsy it could be low grade there could be a small focus of high grade that could lead to invasion... will be very interested in seeing what the parameters are.... not sure when its going to start recruiting but if i hear anything else i can keep you posted.

for post menopausal women diagnosed with DCIS only and who had a mastectomy in the past 6 months you can request to join the IBIS2 study which is looking to see if anastrazole can help prevent invasive cancer.... you can only enter the trial if you havent been on any hormonal treatment in the past 5 years.... your onc should be able to give you more info if you are interested in this.

also in regards as to whether to screen or not if we dont screen then perhaps we would miss tumours that women themselves havent noticed that may well be life threatening if left undetected.

Lulu x

cornishgirl
Member

Re: Informed consent when attending breast screening

But woman have a choice ? they either go for screening or they dont! no one forces them either way,i agree cancer diagnosis and treatment is very distressing for everyone but how would they know if their treatment was done unnecessarily? How would they know their cancer wouldnt have progressed and invaded other parts of their body untill it was too late and possibly even terminal?(DCIS is mostly considered cureable)thats the point isnt it?.
Screening at he end of the day is offered its not manditory, people have a choice if they dont want to know dont go.

And isnt it also the same for Smear Tests? Cervical screening is not a test for cancer. It is a method of preventing cancer by detecting and treating early abnormalities which, if left untreated, could lead to cancer in a woman's cervix ,so if a woman has abnormalitys does she "wait and see" or does she have treatment?
Without wanting to sound harsh if people "dont want to know"to avoid possible over treatment about either screening program they dont have to attend the screening,they can just "wait and see" untill they develope symptoms or not, therfore avoiding any early intervension and possible over treatment.

Linda

stressy_messy
Member

Re: Informed consent when attending breast screening

Don't think anyone is getting het up.

"if they are universally and unequivocally glad to have DCIS found and treated then why not bypass the middle man and go for risk reducing (reducing, not avoiding) surgery?" .... no offence but that would be a bit silly.

A women goes for screening it shows up DCIS....you then make decision on whether to remove it and the risk or you make a decision to leave it and live with the risk....simple.As someone already said it's about choice.

I did look out for quotes on the original post and they were not ther that is why I thought maybe it was your own words 🙂

Doesn't really matter now 🙂

Think I have said enough on this subject lol.

Melx

Guest user
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Re: Informed consent when attending breast screening

Mel
Yes, I changed it because people were missing the point and were getting het up about DCIS and how glad they are DCIS was found and treated regardless of whether it had any "potential" or not.
To disgress slightly - if they are universally and unequivocally glad to have DCIS found and treated then why not bypass the middle man and go for risk reducing (reducing, not avoiding) surgery? Just a thought ...

So, back to the kernel of the issue - informed consent for screening.
CM

P.S. The original post was the reader's letter in quotes and not the original article, just wanted to clarify that.

stressy_messy
Member

Re: Informed consent when attending breast screening

Someone has changed the title of this thread.It was called "dangers of diagnosis".....how strange lol.

of course we should be informed that DCIS may or may not turn into invasive cancer and then make up our own minds on what to do.And if someone decides they want to leave it then it's up to them.Although as I said before I couldn't sit around with a ticking time bomb that may or may not go off in 1, 5,10,15 years or maybe not at all.I would rather not have the risk.

Melx

My responses have been towards the original post and title of this thread which have both now changed

Guest user
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Re: Informed consent when attending breast screening

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.

Guest user
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Re: Informed consent when attending breast screening

Hello all
I've missed the debate but I think I need to clarify that what I was posting, and intending to link, was not the original article of 13th March but the reader's reply in which I felt the core was about Informed Consent and the current lack of information given to those beckoned to or attending screening. The reader said that had she known the full facts then she would not have attended. She was not given the full facts and it would seem that many women are not given sufficient information on which to base an INFORMED decision; that would seem immoral and unethical, to me anyway. The very vast majority go to screening because they think it will reassure them that they do NOT have cancer but that is NOT the purpose of the programme. Regardless of whether I am in support of screening or not, to fail to inform someone of something so serious and life changing and indeed life threatening (women die from treatment and women die from mammography induced cancers) should be challenged by women as the intended subjects of screening. How will we change/improve things if we don't challenge them - rhetorical.
CM

cherub
Member

Re: Informed consent when attending breast screening

I read the Herald article and was interested to read the comments by the SBCC. I looked at their organisation a few years ago a year after I was diagnosed. They are not a charity as they lobby the Scottish Parliament on breast cancer issues. Just my own personal opinion, but I found them to be a bit disorganised. They also sent me a European study about breast cancer that was highly misleading.

pinkrose
Member

Re: Informed consent when attending breast screening

Just want to comment on this. My BC was picked up after (paying myself)for a mammogram age 41 as I felt, due to family history, I was at risk. I was classed as moderate risk so this did not entitle me to a NHS mammogram from 40.

My consultant warned me that early screening meant that everything they find is investigated and this could possibly lead to being over-treated but I thought this was a risk worth taking and my tiny little microcalcifications seen on the mammogram turned out (after stereo-tactic biopsy, WLE, SNB) to be a 4mm, grade 3 mucinous cancer with high grade DCIS with 1 node affected. Further MRI and ultrasounds did not pick up the 24mm grade 2 invase mucinous cancer which were found after I had had a mastectomy.

I class myself as 'lucky' that I was in a financial position to pay for this myself, otherwise I would have had this for another 7 years before it being picked up. My first mammogram, aged 40, was clear. I, too, have come across women that say they would rather not know (would they really) and encourage anyone invited for screening to just go!

Rachel.

GingerLaces
Member

Re: Informed consent when attending breast screening

Hi ladies, just thought I would drop in. Thank goodness I turned 50 and was called up for routine mammogram! I had no symptons whatsoever and was diagnosed on 15ht December. Had WLE with SNB and lymph node axiallary. It had already spread!! Had I waited for the 'lump' to appear, how much further would it have spread. Just finished FEC 3 and now start Taxols on 13th April and then radiotheraphy. This is going to be a year of treatment but prepared to go with it although at times it is tough. The amount of ladies I speak to and say they would rather not know! Well - you will know may be when it is too late, so why not go? I understand that screending is coming down to 47 in 2012. Personally I would always go when invited, but we also have a choice. I had no choice, I had cancer and knew nothing about it:( And I checked myself regularly, which in my case was not enough. I also appreciate that too many mammograms are not good, but choice? Keep checking Adi x

Guest user
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Re: Informed consent when attending breast screening

Hi

Thanks to the screening programme; on my first mammograme at 50, now 51 I was called back for a small cluster of microcalcifications. No lumps or any other signs I would have picked up myself.

A further mammo magnifying the area confirmed the calcifications; nothing shown on ultra-sound; physical exam nothing found.

A bi-opsy carried out but warned it may be nothing; test result inconclusive.

I was given the chioce do I go for a WLE with a wire inserted into the area or not. Medical team recommended the surgery, but warned again it may be nothing & could be considered over-treatment.

I had to choose do I not have the surgery and risk it may be something or have the op when it may be nothing.

I took the surgery; an area of 13mm removed; confirmed as DCIS (low grade). Athough non-invasive it was possible to be invasive over time; would I cope better with treatment now (51) or 10 to 20 years time when I was that much older and possibly more serious.

I needed second op as margins not clear; I also finished 3 weeks rads on 19/3/11 due to my age/size of DCIS & various family members who have had cancer.

For me this was no contest; I feel this non-invasive & possible future invasive cancer has been strangled at birth. If it recurs then I've done as much as I can to avoid this.

At no stage did I feel this was overtreatment. Even if the first op had shown it was not DCIS or invasive cancer at least I knew.

Just need my follow up appt with Onc in a few weeks after rads completed; & hopefully apart from annual mammos get on with my life.

As a by-product I was picked up for Type 2 diabeties on the pre-op tests. I didn't know I had that either as no signs/not overweight/don't smoke etc. Again for me this was a bonus as now my blood suger/chlorestorol coming down to healthy levels. I haven't felt this good for ages.

Regards
Lynne

Lisa_x
Member

Re: Informed consent when attending breast screening

Sometimes they don't show up on ultrasounds either. I had ultrasound and was told it was a cyst and they DON'T DO MAMMOGRAMS ON UNDER 40's. 7 months later, I get the full works, ultra sound, mammogram and biopsies with IDC of 76mm and DCIS of 94mm. Absolute crap, cyst? my ass!

ChoccieMuffin
Member

Re: Informed consent when attending breast screening

There is also the possibility that a tumour can be mammogram-occult, i.e. it can't be picked up on a mammogram. I was referred to the clinic after finding a lump myself and even though we knew there was a lump there, it didn't show up on a mammogram. It DID show up on ultrasound and MRI, but if I had just had a mammogram, it would not have been picked up.

The screening programme doesn't pick up every incidence of cancer, but it does do a better job than no screening at all, so I am in favour of it and would be happy to encourage anyone invited for screening to attend.

Lulu34
Member

Re: Informed consent when attending breast screening

The screening programme is trying to find DCIS.... DCIS is too small to be felt by a patient usually and by the time somebody feels a lump or notices other symptoms it's normally invasive.

It's also quite a hard thing to research as they cannot exactly do a randomised control trial allocating women with DCIS into the active treatment or no treatment arms to see who gets invasive cancer or who lives the longest.

Although some of you ladies wished for early screening it may not have made any difference... I had annual Mammo in June 08 no evidence of invasion or DCIS but by may 2009 I had 1.9 cm invasive tumour but including DCIS was 2.9cm... You couldn't really have a Mammo every month because it just isnt practical but for all I know the DCIS could have appeared the day after my Mammo.

Sometimes I think pre cancer we put our faith in screening more than in being breast aware as we are now. Rarely do you think now oh that feels lumpy I'll leave it a few months and see what happens.

But I think the message needs to get out to some gps to take concerns seriously and young age doesn't make you immune to bc and that a GPs hands are not somehow better skilled in determining whether a lump is cancer or not, over a breast consultant's, imaging or pathology.... There are guidelines for a reason.

cornishgirl
Member

Re: Informed consent when attending breast screening

Exactly, my story was pretty much the same, had i been screened earler my DCIS would have been picked up much sooner and i wouldnt now have invasive cancer, as it is now i have to spend the rest of my life with a TICKING TIME BOMB!

Like i said earlier to me its like playing Russian Rulette, so i dont realy understand the arguement,but if people want to take "risks" with their lives thats their choice.
Just my View.

Linda

stressy_messy
Member

Re: Informed consent when attending breast screening

Hi kittikat,yes that is the post that was put on here thanks for that.
I see it was a reader's comment.

The reader states that

"I unequivocally regret attending screening for breast cancer. Had I been properly informed, I would not have gone. Diagnosed with ductal carcinoma in situ (DCIS), had I been told about the over-treatment of pre-cancers which might never prove problematic if left untreated, I would have walked away instead of agreeing to treatment. Had I walked away, I might later have developed symptoms. If treated at that point there is a good chance my prognosis would be the same. Just possibly it might have been too late. Quite possibly I might never have developed symptoms"

We are all different and have different views and mine is.
Had I been able to have screening from an earlier age my DCIS would have been picked up before I got invasive cancer I may of had to have a lumpectomy or mastectomy but I probably wouldn't have gone on to get invasive cancer with lymphnode involved and the risk that I could die.Some lump's are hidden and are not easily felt and even for some who find a lump the cancer has already spread.Why take that risk,I would rather be over treated than sit around with a ticking time bomb that may or may not go off.

Melxx

Guest user
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Re: Informed consent when attending breast screening

The article originally posted was not the article in the Sunday Herald, but (I think) a comment made online about the article.

I'll try a direct link to the comment/article, but it's really long so it may not work...

http://www.google.co.uk/url?sa=t&source=web&cd=2&sqi=2&ved=0CCAQFjAB&url=http%3A%2F%2Fwww.pressdispl...

Failing that, if you copy the line below...

"Screening propaganda" "dangers of diagnosis" "Sunday Herald"

...and paste it into Google, it will bring up 2 results, the first is this thread, the 2nd is the article originally posted here.

Guest user
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Re: Informed consent when attending breast screening

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.

stressy_messy
Member

Re: Informed consent when attending breast screening

Hi,this is the article in the sunday herald

http://www.heraldscotland.com/news/health/breast-screening-is-it-worth-it-mammography-saves-lives-bu...

But this was NOT the article put on here by CzechMate.Maybe the post from CzechMate was her/his own words and not an article from the paper.I have looked and can not find any other article in the paper.Hope she/he can post to clear this up.

Melxx

Oopp's did it again,posted the same lol.

Guest user
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Re: Informed consent when attending breast screening

Guest user
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Re: Informed consent when attending breast screening

so can you send the article please and find out if it could be posted?
I would like to read it or if someone would kindly pm it to me. Thanks.

Jo_BCC
Member

Re: Informed consent when attending breast screening

Hi all,

Just to help you out if you're unsure about posting on a particular subject. If you are concerned that your post may cause problems then you can always email what you would like to post to:
and ask for the post to be read and approved before you put it live onto the forums, that way we can try to avoid any heated arguments. We've got no problems in helping here.

Hope that makes sense ladies.

Jo, Facilitator