Informed consent when attending breast screening

Got an alert from the Sunday Herald about this article, very good case:

• 27 Mar 2011
• Sunday Herald
• Topic of the week Screening propaganda
dangers of diagnosis

Hi, the trouble is they can not tell which DCIS will go on to be invasive cancer,they do know that high grade will at some point go onto being invasive.I had DCIS and invasive and know that if I just had the DCIS I would still have had treatment even if told it MAY not progress on to becoming invasive.DCIS is still cancer cells and unless someone could definitely tel me that it wouldn’t turn into invasive cancer I would want it removed.

I don’t understand what is meant by

“There is a big propaganda industry surrounding breast cancer, with Pink October and fun runs in fluffy bras”

Melxx

Mel
I understand the comments but have removed most of the post. Someone just tipped me that BCC don’t like such posts, too controversial. Oddly enough BCC hosted a talk by Prof Mike Baum at the Royal College of GPs last year but I think they are not overtly supportive of fully informed consent for screening so will leave it at that.
CM

Mmmmm,removed the whole post.Now my post make even less sense.

would still like to know what was meant by the propaganda bit.

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

Don’t know anything about BCC removing people’s posts but it sounds as if the article you refer to is to do with the ongoing (and not new) controversy re screening.

There have been a number of threads about this on the forums and strong feelings about the ‘flip side’ of screening - and the early detection of pre-cancerous DCIC - which at present inevitably leads to the full treatment works and all its attendant fears and horrors - all of which might never have been necessary. (repeat , might)
One hopes that this is an area where all the millions spent on BC research will soon bear fruit.

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

Well said Lulu,(i get the gist of it now duh) anyway, isnt it a bit like playing “Russian Roulette?”
I had stage2,grade 3 invasive IDC sourounded by DCIS, and was told by my breast surgeon that it was the DCIS that had turned invasive and i had proberly had it for a few yrs ,i was below screening age so never knew anything until i discovered a lump .
Would i wait and see if i only had DCIS? definately NOT! DCIS has a exelent cure rate, invasive is another matter .

Linda x

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:
<script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> 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

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.

Hi

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

Leah

Hi,this is the article in the sunday herald

heraldscotland.com/news/health/breast-screening-is-it-worth-it-mammography-saves-lives-but-does-cause-harm-do-benefits-justify-risks-1.1090114

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.

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.

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…

google.co.uk/url?sa=t&source=web&cd=2&sqi=2&ved=0CCAQFjAB&url=http%3A%2F%2Fwww.pressdisplay.com%2Fpressdisplay%2Fviewer.aspx%3Fissue%3D61012011032700000000001001%26page%3D35%26article%3D206ffbff-de52-4b83-bc86-1d09aede59e7%26key%3DWxNcT9mTkMjSc%2F8aJzAASw%3D%3D%26feed%3Drss&ei=YOmSTZWECZOBhQf4-PSODw&usg=AFQjCNGbU1mS6IUfzM_U5K_h2iqzC9AV2A

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.

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

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

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.

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.

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

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