Informed consent when attending breast screening

Hi CzechMate,
I would have liked to have read your post as i didnt see it so am confused now lol,who tipped you off that BCC doesnt like such posts?? as im not sure that is correct ive never known BCC to bann posts for being controversial, maybe you could ask BCC if they have any objections to you reposting it.
Bit odd ,if BCC doesnt like a post they would normaly just remove it but only if it was offensive.

Am curious now lol.
Linda x

i think this has been mentioned a few times in the past... although DCIS itself is not cancer but pre cancer it may go on to become invasive.

high grade DCIS is more likely to develop into breast cancer than low grade DCIS.... although not all HG DCIS would turn into invasive cancer just as much as not all LG DCIS would not turn into invasive cancer.... likewise some people dont have any DCIS and still have invasive cancer.

the benefits of removing DCIS generally outweigh risk of leaving it... not sure how many people would feel happy living with it and have the worry of if or when it was going to develop into cancer.

one of the benefits of removing DCIS is that it hasnt become invasive and because it is contained within the ducts it cannot spread elsewhere and we know its not the cancer in your breast that does the serious damage its the cells that move to other parts of the body that is life threatening.

we probably do over treat but even with invasive cancer not everybody who develops it would go to develop life threatening disease even without treatment but who would want to take that risk?

Lulu xx

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:

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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

Hi

The article is here if people want to read it http://www.heraldscotland.com/news/health/breast-screening-is-it-worth-it-mammography-saves-lives-but-does-cause-harm-do-benefits-justify-risks-1.1090114

Leah

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.

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

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.

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!

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

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.

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.

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

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.