I read the BMJ article. The authors want the statistics on the value of breast screening given as baldly as stated by JaneRA in her comment on 20th Feb. They acknowledge that people are distressed by being recalled to check on a mammogram, but do not acknowledge the distress that could be caused by reading the figures without explanation of what they really mean. There are not often professionals with you when you read the leaflets.
It is distressing to be called back as I know as I was diagnosed with DCIS at my first mammogram when I was 50. But I am glad that I went through what was a very painful experience as I went on to develop breast cancer and have since had a recurrence. The authors of the article do not suggest that leaflets should give you contacts for counsellors which might be more useful.
The authors of the article talk about the problems from radiotherapy as not being raised in the NHS leaflet when it explains about radiation from the mammogram. I think it is misleading to want this included as not everyone has radiotherapy and my experience is that the oncologist explains the risks as it is one treatment option among several. Overall I think breast screening is beneficial as it raises awareness for many women. While it might not find every occurrence it does find many.
The article is in the public domain and can be read on the bmj web site. Comments can also be added there.
Sorry yes I am sure if I was dx with mets I would want all the scans etc as they would be important to monitor treatment.
Thanks, Jane - and Val! - I thought that was so, just wanted clarification.... knowing something about both of your bc situations (very different from mine).
I think horace is talking about her experience as someone with primary bc. I felt pretty much as she does before my recurrence...I welcomed seeing consultant every three months for 2 years but for the chat, and clincial exam not for tests and scans.
I think with a secondary diagnosis it is different...because scans and tests monitorr how well cancer is responding to treatment and decisions can be made about switching treatment if necessary...so now yes I have scans.
Celeste...sorry if you think we have crossed wires somewhere. Not my intention.
By the way I would never accept any sort of diagnostic scan as a 'routine'followup[endquote]
I've never been worried about being expected to have routine bone scans and blood tests from the Marsden (I have bone mets) - should I be saying no to these?
This is irrelevant I fear except as anecdote.I pay to have my followups privately because I welcome the opportunity to discuss any concerns with onc or surgeon and hopefully resolve them.eg in July I found a small lump in 'good'breast and was able to have ultrasound and fna which showed up a benign cyst,dx within the hour.Same with mammograms though I do worry about the yearly blasts of radioactivity.I feel women must be given all the information available and be allowed to make informed decisions without criticism.However many women welcome the professionals 'telling them what is best'I just wish that those of us who do want to know everything could be given facts freely as required.By the way I would never accept any sort of diagnostic scan as a 'routine'followup.No CTs,MRIs or bone scans unless symptoms demand them.Sorry to waffle.
Well spotted celeste.
Folow up makes no difference to mortality rates
Follow up has a point as reassurance
Different. Get it?
Back to that conference...which incidentally was really good...could another done be due BCC? (There was a sub text going on about some women getting 'upset' by some of the presnetations, but I thought the conference was the most informative meeting I've been to on breast cancer..no pick fluff for once and the joy of being treated as an adult!)
I think Mole's memory is correct and that one key message from the dicussion on follow up was that it makes no difference to mortality figures. Most women find their own recurrences or report symptoms between follow up appointments, and in any case delay in recognising secondary recurrence does not make any difference to life expectancy (I think this view has been challenged in relation to some cases of bone mets)
Clinicians and patiens have very different views of follow up. For clinicians it can seem the wrong use of resources, but patients find follow up appointments, though stressful, very reassuring. The question was raised about whether follow up should be specialist nurse led rather than clincian led. I think many wpmen at the Conference did not like this suggestion, but I can see it makes sense. Follow ups could be nurse led with referral to doctors only where a problem was identified. What women most want is reassurance and a longer talk with a nurse might provide that more effectively than a quick in and out with the consultant.
Another issue raised at the conference was the idea that follow up could be different for 'high risk' women.
I can quite understnad Mole why you have declined follow up. Personally I did find it gave me reassurance..albeit for a short time!
I went to the same conference and whilst I don't remember them saying that follow up didn't make any difference to mortality, i came to this conclusion so may have picked it up there.
I haven't had any follow up - and I don't intend to have any
Sorry just to be clear - I didn't have a mastectomy, I did have 2 wide local excissions and radiotherapy. The first Dr. I saw told me that if I had a mastectomy, that would be the end of the cancer, and it wouldn't come back. Two other Dr's told me it wasn't necessary and statistically the chances of recurence was very small.
Knowing what I know now - well you can guess what I would do. Although my consultant insists this is a separate new event, so a mast would not have helped.
Of course we should be given all information, I cannot bear the 'nanny knows best' kind of medical attitude I've come across from medics & co., but how difficult it is to be honest, when relatively speaking we still know very little about this very complex disease.
Jane you may well be right about what I heard at bc conference, my memory is certainly nowhere near as good as it once was.
Mole highlights a couple of important points:
1. The pressure to take up screening appointments - so that anyone who looks at the facts and decides not to be screened is likley to be made to feel irresponsible.
2. The lack of statistical integrity that occurs when people who should know better compare 5 year survival rates pre screening programme with 5 year survival rates post screening programme. It's not comparing apples with apples.
Obviously the survival rates post screening will improve because you are including a whole lot of women with early stage, screen detected cancers whose cancers might never have been detected without screening(or would have been detected symptomatically at a later stage), with women whose cancers were only detected by symptoms.
It would be staggering if most of the screen detected early stage cancer patients didn't survive at least 5 years. (btw, DCIS is counted separately and not included in the 5 year stats)
This artifical skewing of survival statistics has a knock on effect on mortality stats, because it muddies the waters and makes it very difficult to unravel to what extent improved survival and reduced mortality are the result of screening and to what extent the result of improved disease management and treatment.
I think the best way to find that out is to only compare symptomatic patients now with symptomatic 20-30 years ago. But nobody seems to want to do that.
The only certainty with this is the huge amount of uncertainty!
1. We really need a study on DCIS (and possibly grade 1 invasive cancers) like the ProtecT Study (Prostate testing for cancer and Treatment). It's taking place at 9 UK Centres to compare:
Surgery (radical prostatectomy), Radiotherapy (radical conformal) and Active Monitoring (monitoring with regular check-ups).
Women need a study that compares current treatment for DCIS with active monitoring. There's already the NHS Breast Screening Programme Sloane Study looking at improving quality of care for Screening detected DCIS, other non invasive breast cancer (LCIS, I guess) and atypical hyperplasia. But I don't believe it's studying active monitoring.
2. There is a study taking place on follow up for Breast Cancer called ibreast looking at comparing nurse-led, radiographer and GP follow up.
Breast clinics are being swamped with new referrals and follow ups so the study is looking at the best way to manage follow ups in the future. I believe there are opportunities for patients to be involved in ibreast, or at least find out more about it. So if you are interested, pm me. I know the investigators.
I don't think anyone is suggesting that there should be no follow up at all because breast cancer can come back many years after original diagnosis. Also if you don't follow up, how do you know whether or not the treatment you gave actually worked? Follow up is an important part of research.
I was one of many who were diagnosed at a first routine mammogram shortly before my 51st birthday. Despite having no symptoms I had multifocal Grade 3 tumours which had spread to my nodes at all levels and I had lymphovascular invasion.
It seems quite likely to me that without that mammogram I could well be dead now. And if I'd been born 6 weeks earlier, I may have been diagnosed a year earlier and escaped such aggressive treatment.
Had I been diagnosed with DCIS, I would have researched and considered the treatments offered. Perhaps that's the time when more honest information is given rather the advice that you should have a mastectomy.
I don't think unneccesary overtreatment justifies the loss of life possible if screening was cut back. I'm not sure I am convinced by the statistics anyway. Earlier detection may simply mean you live longer from diagnosis and they tend to measure survival at 5 or 10 years, not being desease free. Therefore, if you'd waited for the symptoms to appear you would be more likely to die withing 5/10 years than if it was picked up before symptoms appeared.
Guess we all remember selectively. I remember interesting presentaions about follow up..including one from a woman who had done research at BCC about more nurse/less doctor involvement at follow up. No one said there was 'no point'...it was as I recall a very balanced and intersting discussion.
I understand the arguments about follow up...very few recurrences are found at routine follow up...most are indeed found by women reporting symptoms themselves...this happened to me.
As they say statistics and damned lies......!I worry about these statistics, as I worry about most.
My DCIS got picked up on my 50th birthday mammogram. At the time a friend told me that my DCIS may not develop,and advised me to do nothing. Equally the medics clearly were of the view that I should have the op and accompanying rads. The trouble is there are no statistics available to say it wouldn't develop. There have not been any significant trials simply because there have understandably not been enough women who have decided when faced with this diagnosis, to do nothing. So how on earth do they assess this. As many of you know I had the treatment, bibs and braces and ended up a couple of years later with secondaries - a new event I'm told. Who knows.
Daphne, Jane do you remember at the BCC day at the Royal College of Meds when the Dr. (S.C. wasn't it Daphne?) who said there was no point women coming for follow up appts, as there was statistically no reason to, as very few women are found to have recurence or spread as a result of these. He said these appts with onc's were too expensive just to provide reassurance. Is that right?
Isn't that what we all want these days, - reassurance that it hasn't been diagnosed, spread, recurred, at whatever cost. How would we be emotionally without these appts, able to move on because we aren't continually reminded, or frozen in headlights because we are constantly fearful?
I should say sorry I havn't read any of the discussions in the Times flagged up here, and I know I should have done, so if it is repeating what I have just said - apologies.
I complained about the leaflets I was sent when I decided not to have mammograms at aged 50. the second set of leaflets sent to me contradicted the first because they gave me Backup's leaflet which distorted the statistics due to a misunderstanding, so it appeared far more people who were recalled after a mammogram were diagnosed with cancer than in reality.
Every leaflet is biased in favour of breast screening and you are assumed to be a bit of a div if you don't take up screening. The reason for this is that screening only adds up if large numbers of women take up screening because it picks up a relatively small number of tumours but as breast cancer is very common it is worth while provided enough women decide to go for screening. however, screening tends to catch the more benign kinds of tumour which are less likely to kill than the faster growing type that you find yourself.
As my cancer didn't show up on a mammogram even after I found the lump i wasn't keen to go through any more and I am going to take my chances. I certainly don't want to find any DCIS before it beccomes invasive as in 70% or so cases it won't go onto become invasive. I've already had one lot taken out probably unnecessarily so don't want to go there again.
I'm an optimist, but also a realist. I think the NHS will resist any radical rewrite of the leaflet.
There's too much at stake in terms of investment in the Breast Screening Programme - roll out of digital, extended age ranges, NHS targets for screening uptake and loss of face for those who don't want to admit that screening is not quite as wonderful as they've made it out to be.
There's as much politics to all this as science.
Also there is a view from some experts that it will take time for the concept of screening over-diagnosis and over-treatment to become accepted by the public because it is a new concept for many.
For this reason, I think a radical rewrite of the leaflet will face hostility from some women and patient representatives.
But for ethical reasons, it must be done. Women are entitled to full, unbiased, evidence-based information.
The point the articles are making is not that screening is not beneficial - clearly there have been cases when cancer would not have been detected without mammography. However, as Jane suggests, that early detection doesn't necessarily equal cure as some cancers, not matter how early they are picked up are lethal and others are not. It would seem that the experts still are not sure which are which thus they chuck us all into the same boat underlined by the premise that it has to be better to pick up cancers early and overtreat those with anomalies which may never be life threatening, than miss out on a cancer which is potentially life threatening. And as with all forms of screening, there are loads of ethical issues raised - unecessary treatment and worry, cost in terms of money and time and taking the focus away from finding out the causes of cancer. But whatever the issues raised by whether to screen or not, we should without any excuses, be given the facts so we can decide for ourselves. It makes me so angry that medical people think that the poor old lay people are so stupid that they shouldn't blind them with science because they won't understand anyway. Ok, some may not understand statistics and some may not be interested, but that isn't up to the "experts" to decide - that's up to the individual. They can throw the leaflet in the bin or choose to undertake a massive literature research based on what they read n the leaflet, but the choice is theirs to make, not the experts.
I also have very mixed feelings about screening.
Since my Mother died of breast cancer, I have spent 23 years having them. For the most part I always felt reassured; but this summer I had to battle with health profesionals to get a referal as nobody took my lump seriously because I had, had a mammogram 2 weeks prior which was clear. I had a multi foccal grade 2 IDC with extensive DCIS.
Not suprisingly I am not reassured that they have "reviewed their practise" or with "hindsight" admit they made a mistake.
on the 1 in 2000
this means one life being saved because of the effects of screening and early diagnosis.
Some people who get diagnosed through screening will die anyway...such is the diverse nature of cancer. They just know they have it for a bit longer.
I think it is really good news that the NHS is rewriting its leaflets to be more informative and accurate. The intention is that women then have corect information on which to base their decision to have screening or not. There are so many myths about screening and these need to be challenged.
I was personally let down by mammograms and screening, and certainly by the poor information I had about the usefulness of screening (basically I was far more reassured than I should have been by several 'clear' mammograms in the years preceding my disgnois.) e.g no one told me that 'lumpy' breast and cysts make you slightly mroe likely to get breast cancer...I assumed I was 'safe' because I was getting regular mammograms.
There's another thread on these forums about women not being given information about the fact that chemotherapy can occasionally cause permanent hair loss. Of course all women undergoing chemo should be informed about this, and in my book 'of course' women should be told of the risks as well as the benefits of screening.
As I've said before the focus on screening detracts resources from the more important issues of prevention, treatment improvements and cure.
If anyone's interested, The Times has reported this quite fully:
(There are two articles and you need to scroll down the page a bit to find them)
I have mixed feelings about mammograms - don't think you can argue they are absolutely not a good thing, but I don't think they can be regarded the be all and end all of detection methods, either. I would be interested to know what the relative costs were of MRI, mammograms, ultrasound, etc.
My latest bc surgery was the result of decision of a consultant (bless her) to send me for a PET scan even after an ultrasound and mammogram showed nothing.....
I too would never have found my lump without routine screening.I never felt anything at all even when I knew it was there.Mine was 2cm triple neg and described as subtle by my consultant who also had problems locating it except on mammo.I think this is a dangerous message re screening and could make more women 'not bother'to attend.
Can't quite get my head around this statistic of 1 in 2000 lives saved by screening. If I am the 1 (which I definitely think I am) then there are 1,999 women who have all been called back after screening for no reason at all and been scared without good reason? Is that what it means?
Times 21st February:
NHS rips up Breast Cancer Leaflet and starts all over again.
Good news, but a wide range of experts and patient advocates need to be involved in producing the new information.
I don't think leaving it to a small group including the NHS and charities like Breakthrough Breast Cancer and Breast Cancer Care would be right. I don't think they can be trusted to do an impartial job. The NHS has invested huge amounts of money on breast screening and sets national targets for screening uptake. It isn't going to easily acknowledge and respond to the limitations of screening.
In my view, the charities have been complicit in denying women access to full information and I find that inexcusable.
I caught this on Channel 4 News last night and it really made me think. The statistic of one life in 2000 saved was startling!
I too was caught through screening - no lump, felt very healthy so it all came as a shock. I had a mixture of DCIS and invasive cancer so presumably a lump would have eventually appeared by which time my cancer would have been further along its journey. I definitely had no lump or outward signs when I was routinely mammogrammed.
So to me, screening has paid off.
However, I'm aware that for some time there has been some controversy about screening and the possible over treatment perhaps of DCIS.
Regardless, we should always be given as much information as possible about the process and what might follow. To deny us such, suggests we are a little bit silly ... just women!! I definitely believe Breakthrough, BCC or any other charity should be concerned about our rights to information.
I'm in a similar position, redders, in that mine was caught early through routine screening. I agree that women should have all the information so that they can make informed choices at each stage. Not just the decision of whether or not to go for screening but also if something is picked up what are the options for action or wait and see.
Some of the discussion I have heard (mainly on the radio) following the letter to the Times yesterday has involved medical people speaking quite patronisingly about giving the information. Along the lines of most women not wanting to be bothered with all the statistics. When someone suggests to me that I might not want to be bothered with the statistics I wonder what they are trying to hide.
Thanks Jane for explaining the controversy. I just caught a bit on the news yesterday and didn't hear what it was really about. My BC was found on a routine mammo and in its very early stages, so I suppose I'm in favour of them - especially as mine was aggressive and er/pr neg. However I'm all in favour of ALL the facts being given and for women to make their own minds up as to what they want to do, without pressure from anyone else - medical or otherwise. Although some people seem to like being told what to do by doctors - but not me!!
Check out Ben Goldacre's website and seach on Screen Test. There's a nice discussion about it.
Jane's right. It's the 21st Century. When are Charities and the NHS going to stop treating women like little girls?
Thanks for raising this important issue Daphne.
For those who don't know: 23 signatories (cancer experts) to a Times letter yesterday argued that the NHS is failing to provide accurate information around the risks as well as the benefits of breast cancer screening. The letter follows the publication in the British Medical Journal (BMJ) of a report from the Nordic Cochrane breast cancer centre which has shown that:
for every 2000 women screened regularly for 10 years 1 life will be saved
for every 2000 women screened 10 will be treated unecessarily for an abnormality that might never cause harm
for every 2000 screened 200 will have a 'false alarm' and all the worry which goes with that.
The point here is that the NNS lefalet explaining breast screening does not mention these problems...and it should do so that women can make an informed choice about whether to attend for screening or not.
Like Daphne it worries me a lot that the two major breast cancer charities (Breakthrough and BCC) are failing to raise these problems. Indeed I think the charities focus far to much on screening in their campaigning and too little on prevention and lobbying for improved treatments. Another example of adult women being treated as small children incapable of making their own decisions.
I hope Ben Goldacre takes this up in his Bad Science column.
If you saw the Times yesterday (19th Feb), you'll be aware of the controversy as to whether women are being given enough information to make an informed decision about screening.
Breakthrough has posted a response to the criticism on its website and I have nominated the response as an example of Bad Science to Dr Ben Goldacre, who has a Guardian column and website called "Bad Science".
I've told Breakthrough that I don't think it's helpful to loosely compare breast screening with MMR vaccination. The danger is that it perpetuates the myth that, like a vaccination programme, breast screening is a prevention programme, when of course it is not that at all. It is an early detection programme.
Both Breakthrough and Breast Cancer Care are clearly concerned about the controversy causing a drop in uptake of screening appointments. I agree that is a possible consequence of women being given something they don't currently have - full, unbiased information about benefits and harms of screening, to enable them to make an informed decision as to whether to participate.
I wonder do Breakthrough and Breast Cancer Care have a problem with women being given all the facts and making informed decisions? I think both need to raise their game in future engagement with their patient supporters. The charities' policy of using young, bright, shiny staffers to tell women what's good for them is out of date and lacks credibility, especially now that more baby boomers are being called for screening. Many of that generation won't accept being told what to think because they have been educated to think for themselves. (Of course this also applies to women of all ages, not just baby boomers)
I think women have a right to full, unbiased information to help them make decisions about healthcare interventions. They are not getting that at the moment for Breast Screening.