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

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.

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.

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

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.

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

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.

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 :slight_smile:

Doesn’t really matter now :slight_smile:

Think I have said enough on this subject lol.

Melx

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

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

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.

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

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

This is an article from the herald regarding the leaflet

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

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.

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 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.

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

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.

healthscotland.com/uploads/documents/15270-BreastScreeni
ngWhatYouNeedToKnow.pdf

Sorry that link didn’t work heres another one

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

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

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
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

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.”

cancerscreening.nhs.uk/breastscreen/save-lives.html

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

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