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over diagnosis and breast screening

55 REPLIES 55
CheshireCheese
Member

Re: over diagnosis and breast screening

Thanks for posting that link Tina.
A fascinating lecture from Prof Baum, confirming my worst opinions about screening. Also interesting to note that someone has left a comment noting that the situation with cervical screening is even worse.

topsymo
Member

Re: over diagnosis and breast screening

Thank you very much for posting this Tina.

I wish everyone who has given their 'anectodal' experiences on this thread ( as I Have) - would take the time to watch and listen to Prof Baum's lecture.

At least then they would see that the whole issue is NOT just about saving money for the NHS

Tina46
Member

Re: over diagnosis and breast screening

A very interesting lecture at UCL on breast screening. It's about 30 mins long but explains the figures and statistics well.http://www.youtube.com/watch?v=JxDnRMU-l7w

katytc
Member

Re: over diagnosis and breast screening

Thank you Lulu34 for clarifying the term anecdotal evidence for me it is much appreciated. You have explained it beautifully xx

Lulu34
Member

Re: over diagnosis and breast screening

Katy

Anecdotal evidence is medical terminology for something not proven by research. I'm sure many people would be ofended by the term in relation to their disease or illness but the anecdotal refers to the research and not the disease or person. Unfortunately there is a lot of medical terminology that doesnt sit comfortably with the gneral public but it's very difficult to change a whole professions terms, particularly when it's an international term.

Lxxx

katytc
Member

Re: over diagnosis and breast screening

I apologise if anyone is offended by my comments but I am offended by the words anecdote or anecdotal being referred to breast cancer experiences which are relevant to this discussion.

The words keep cropping up the first being, anecdotal experiences, in a debate, as serious as this, I do not find these stories humorous or amusing.

The second being anecdotal evidence, so I assume that means we love to tell funny and humorous stories to our doctors, radiologists, surgeons,oncologists and any research we are involved in, about being diagnosed with breast cancer through the screening programme.

The evidence is that many on here were successfully diagnosed through screening with hidden invasive or aggressive cancers, so I would like to know how the researchers can successfully assume that if unscreened what exactly our chances would have been in 1 or two years time.
I also am not so naive that I think the screening programme is the be all, end all, I know bc is not found in all cases I was one of the lucky ones where my cancer was found through the programme, should that choice be taken from others? I don't think so.
I am being checked for secondaries this week, is this overtreatment?
Will I be telling humorous stories to the radiologists?

AnneG
Member

Re: over diagnosis and breast screening

I have kept quiet so far, because this is a topic I feel strongly about and I don't want to either provide or provoke an angry response.

I am one whose very aggressive grade 3 HER2+++ cancer was found at screening. It was deep and not palpable and I had no symptoms at all. I was told that by the time it was palpable, my situation would have been very different. I might be an anecdote but I am very glad to be alive 4 and half years on.

Over treatment - I doubt it for such an aggressive cancer. WLE, FEC, 6 weeks of rads, a year of Herceptin, 3 years of Arimidex, changed to Aromasin which I will take for at least 5 years. However the treatment I received (chemo) did lead to two life threatening episodes, which, with excellent medical care, I survived. By the way, I have never heard of anyone dying from radiotherapy. Are there any proven cases?

I don't think mammograms are infallible. I had one 18 months before because of breast pain. The result was clear but the DCIS (which didn't show on any mammogram but which was found on analysis after my operation) was, no doubt, present at the earlier mammogram. Had it shown up then, so that it could have been removed at that stage, perhaps I would not have gone on to develop the invasive cancer.

My mother died of agressive BC at a similar age to me - pre the screening programme.

To answer the last question in the previous post, I would still support screening. I doubt if I would be here to answer the question if screening didn't exist. I have 2 daughters who are at increased risk because of the family history and who will need screening from age 40 - I hope it will still exist for them. I am actually confident that it will.

snowwhite
Member

Re: over diagnosis and breast screening

“Anecdotal evidence”= evidence from hearsay accounts as opposed to a large number of relevant cases. No suggestion those accounts aren’t true; only one can’t necessarily go from what one hears about to “it works”. We wouldn’t think much of a doctor who said, “Take this stuff, it worked for my sister.” It may well be true that it worked for her sister. It might work for you, and others. It might not work for everyone. It might harm some people. Investigation of large samples and controls might show a reason why it works in some cases but not others, e.g. it might show that it wasn’t that but something else all those people did which worked; or maybe some people didn’t really get better, or didn’t have the same illness, or didn’t take the medicine, or took it with something else. The best way to find out is to gather as many cases as possible and see if you can spot a trend.

Studies into bc screening are showing that it produces smaller or no reduction in deaths from bc, no reduction in deaths from all causes, and higher rate of mastectomy, compared with unscreened groups where bc mortality has gone down just as much. That means screening is producing small or no effect on death rate from breast cancer. Those who don’t die of bc, still die, but of something else; it is suggested they die from the effects of bc treatments, e.g. radiotherapy. It means women treated earlier don’t live longer than they would if treated later - their survival looks longer because measured from (earlier) time of detection. That is called lead bias.

It means that most cancers found at screening fall into one of 2 groups: those affected by lead bias, who without screening would have found their own cancers the next month, year or decade, and survived after treatment to the same age as if screened; b) the overdiagnosed, who never would have developed bc and would die of something else whenever.

The conclusion is that the downward trend in deaths from bc is due not to screening but to better treatments, and women coming forward with symptoms sooner than they used to when they thought bc was a death sentence, and treatment is working well for lymph node involvement and higher grade cancers. So the evidence is challenging the view that “early detection saves lives”.

Just suppose the review announces that the evidence doesn’t show screening reduces bc death rate, what would you think then?

s

audreytoo
Member

Re: over diagnosis and breast screening

I am glad that I went for breat screening as it picked up my cancer. I had no lump it was just a shadow. It was bc I had lumpectomy and it had spread to my lymphnodes. I am having chemo. If I hadn't gone for breast screening who knows when it would have beenpicked up or how far it had spread. I say thank goodness for breast screening and for the fact that I went. I just hope that the powers that be don't mess up this breast screening program that we have and frighten women into not going for screening.

lilly7
Member

Re: over diagnosis and breast screening

Hmmm....I am waiting. Got the letter last Friday that I was being recalled....I have read a lot about the debate. I really really hope I am one of the false positives, but if I'm not I will be very glad to have been screened, as I have picked nothing up myself.
However this whole waiting has really messed with my head. I have barely slept, eaten almost nothing and drunk far too much wine since Friday, it is an awful time, and the psychological effects must take their toll, I'd have thought.

Mezzomamma
Member

Re: over diagnosis and breast screening

Even small invasive cancers that can only be detected by mammograms and the follow-ups (ultra-sound, biopsy) can have spread beyond the breast. Mine was less than 1 cm and couldn't be felt, but had already reached a lymph node only 2 years after a previous screening. How far would it have spread before there were symptoms detectable any other way?

More radical treatment for cancer which has spread isn't going to cost any less than treating cancer that hasn't spread yet, and that's without counting the physical and mental cost to the person. That isn't to say that perhaps the first line for a DCIS couldn't be regular observation, at least for the lower grades.

I don't think heart screening is necessarily a good comparison, because changes of diet and exercise, with or without medication, might mean that surgery could be avoided.

Unfortunately we have not yet reached a point where cancer can be prevented, slowed or reversed by similar means.

Is there an unspoken presumption that post-menopausal women are simply not worth enough to justify screening and treatment? (Bear in mind that in some places screening starts considerably earlier and is carried out more frequently, at least for those who have insurance or can afford it.)

katytc
Member

Re: over diagnosis and breast screening

Thank you stressy-messy for telling me about the previous similar thread, it was very interesting, think I will bump it because of the various articles etc, really informative xx

kazann2009
Member

Re: over diagnosis and breast screening

Hi All
I felt I had to post as I am one of the lucky ones whose BC was picked up on a routine screening. I was diagnosed with a 8mm grade 1 which couldn't be felt and only just showed up on the mammagram as it was right on the edge (my thanks to the screening staff for being so on the ball). The lump and SLN was removed at the end of September and the biopsy showed that there had been no spread in either the surrounding tissue or the lymph nodes. I am so lucky because by the time this could have been felt, this could be a different story. I still have R/Therapy to complete and Tamoxifen for the next five years, but as yet no Chemo. My mother died of BC 23 years ago because at the time there wasn't a screening program as good as now and by the time it was diagnosed, it was too late. We can't allow it to happen again.
My love to you all xxx Ann

stressy_messy
Member

Re: over diagnosis and breast screening

Hi there was another thread similar to this one a while ago heres a link if anyones interested. http://share.breastcancercare.org.uk/forum/informed-consent-when-attending-breast-screening-t30522s1...

"We all want to improve the outlook for breast cancer, and the Cochrane Review and other research has thrown up issues we should all be debating. Overall, I am in favour of breast screening. It does pick up cancers early, which gives women more choices about treatment. False positives are, of course, an issue. Over-diagnosis is something we all dread, but if the results show a problem, we have to assume the worst and treat our patients accordingly. Watch and wait may be a suitable policy for prostate cancer, but breast cancer has a completely different disease path. Prostate cancer is very slow growing and goes first to the surrounding areas — breast goes first to the lungs, liver and bone, and, once that happens, you are struggling to catch up with it. Anyone who works with breast cancer knows what an awful disease it can be and any weapon we have has to be welcomed."

BMI Healthcare Consultant General Surgeon Mr Rajiv Vashisht.

Melxx

katytc
Member

Re: over diagnosis and breast screening

Hi,

Anecdote, not a word I would use to describe my journey with breast cancer it's meaning:
a short account of a particular incident or event, especially of an interesting or amusing nature.

a short, obscure historical or biographical account.
I personally find the use of this word inappropriate in this context.

Can it be that because the women have been screened, the stats will be less because the cancers that may have developed further have been removed? Therefore the advanced cancer rate does not develop.
The fear I have is for the other women who are not screened if this reassessment is successful, I feel incredibly lucky that I was in the screening programme.
As stated earlier I feel uncomfortable that small or hidden invasive cancer found through the screening programme will not be found until the cancer has progressed and the tumour presents itself.
Do you know how long the Nordic Cochrane Centre has been collating data regarding blanket screening? Very interesting and thought provoking points snowwhite xx

CheshireCheese
Member

Re: over diagnosis and breast screening

Well said Snowwhite, too many assumptions flying around that screening is the "cure" for BC - so far from the truth.

topsymo
Member

Re: over diagnosis and breast screening

Thanks snowwhite; it needed saying and you have said it very well.- better than I did anyway!

snowwhite
Member

Re: over diagnosis and breast screening

This is only about screening the asymptomatic in the screening programme. Not about people in other age groups requesting screens, or diagnosing symptoms people find themselves, or those at high risk. Only the screening programme.

Anecdotes don’t make science. Overdiagnosis is found through statistics - comparing screened with unscreened populations and finding cancer incidence higher in screened populations, without corresponding decrease in advanced cancer incidence years after screening is introduced, less than hoped for reduction in deaths from breast cancer (if any) and in deaths from all causes in the two groups.

Interpretation: screening detects cancers (noninvasive and invasive) which would never progress; not all cancers kill. Combined with what is known from cervical, prostate, lung cancer (they did try screening the at-risk from lung cancer and abandoned it due to overtreatment; same for babies with neuroblastoma in Japan), other cancers and autopsy studies, it is known many people have cancerous changes in their bodies which never progress to cause harm. Cancer isn’t as simple as you think. It can grow slowly (very), clear itself, stay as it is or take off like a rocket. They don’t know enough in many cases to know “what would have happened if…”

If you are screened you risk finding these. If it was rare you might think it worth the risk. If more common you might pause. People react differently and they have a right to make up their own minds. Partly it depends on the treatment: if the treatment was a pill we’d all go for it. The Nordic Cochrane Centre, which exists for the purpose of examining all available evidence about interventions to get the best overview of effectiveness, estimates that about 50% screen-detected cancers would not have progressed. The NHS figure is 5-10%, but not in the leaflets, not in that form on their website. I’m sorry to say they don’t want women to know because they fear it would deter them from attending. It is wrong to keep back facts to get the punters in, however benign they may think their motives. Is that controversial?

It happens to be a sad and almost impossible to believe fact that the NHS is doing this. In 1997 Professor Baum resigned from the Screening Committee on the issue of telling the truth: he set up screening in 1989 and soon found unexpectedly high rates of DCIS which they didn’t know what to do with (and they are still wondering) - he wanted women told, which was only decent. Many would probably still have gone for screening, as the opinion on this thread indicates. However the Committee refused to tell women and gave this reason: if they told women about it they wouldn’t attend. They have gone on doing that ever since, although evidence that screening is not preventing deaths has mounted, and the latest leaflets, revised after pressure, are still squirmy on overdiagnosis - they neither name nor explain it and embed it in reassuring pink flowers well after the big (contested) claims that screening reduces the chance of death from bc.

Overtreatment is of the essence of screening, and should have been explained from the start: a screening test will always miss some, and catch some it shouldn’t have; the leaflet implies that these will be sorted out on recall by “further tests” - but it isn’t true, because they don’t know enough to know which are genuine cancers and which not, and if I had known that at least 850 women that year (that’s the most favourable estimate, that the NHS admits to - but not in the leaflets) would have had treatment they did not need I would not have gone. The NC estimate is 7000. Clearly a lot of women would still have gone - all I want is for women to be told so that people like me have our rights respected, you can have yours. And, surely, even if you decide it is still worth it, it should be your decision on fair evidence, and not manipulated by selective information? It is for the experts to judge whether as a programme it is cost effective.

I personally don’t have confidence in the independence of the review. It is such a political hot potato I can’t see them scrapping it. They certainly won’t throw away all those mammogram machines, and it would be hard to refuse mammograms to women asking for them after 20 years of near insistence that they have them. Just for good measure: Gordon Brown announced the age extension in 2007, but it does not appear to be evidence-based, there is good evidence that more screened women under 50 die of breast cancer than unscreened women, and it is suggested that is because intervention causes otherwise dormant cancers to spread. But it’s a votecatcher.

I'm really sorry to have gone on, but it's not easy to get your head round but it is very serious.

s

katytc
Member

Re: over diagnosis and breast screening

Marion101, really good point, I for one would have been jumping for joy at being told that I did not have cancer!! xx

Marian101
Member

Re: over diagnosis and breast screening

my BC was not picked up by screening, mine was found in between screenings. As prev posters says it is not a given than if you are clear now you will be clear for the next 3 yrs. I have no cancer in my family so very much a low risk.

I am in my fifties, I found a lump about 25 yrs ago, biopsies etc were not as good then. I had to have an operation to remove the lump & then test it and it was about 10 days wait. It turned out to be benign. You could say that having the lump out was "over treatment". The worse bit I heard on this subject was the 200 or so women that were "psychologically impared or traumatised" by being investigated for cancer and then turned out to be cancer free. How can you be traumatised for long when you told you do NOT have cancer. It is the rest of us who are told we have cancer that have the right to be traumatised. Mammograms have to stay.

southernlucy
Member

Re: over diagnosis and breast screening

Whilst appreciating that many episodes of breast cancer are picked up by screening I would like to say that having had a negative screening you cannot relax for three years. I found lump one year after screening that was then found to be two connected lumps with lymph node involvement and DCIS in the other breast. The care since has been brilliant. Just really to say self examine as well

katytc
Member

Re: over diagnosis and breast screening

sarahlousie, so sorry you feel this way, I started this thread because I was horrified at the thought of the powers that be stopping screening, in my opinion it is extremely frightening and deserves our thoughts and comments.
You are allowed to have your own opinion, that's democracy!!
You are telling your story and that is vital to this forum, so do not let anyone put you off ever, you do not have to justify your comments to anyone.
Hope you read this, take care and best wishes xx

sarahlousie
Member

Re: over diagnosis and breast screening

Not really liking the tone on this thread since I posted, I was giving my opinion not telling everyone they have to think the way I do, I accept everyones different and this disease treats everyone in a different way. Again I am now on herceptin for the rest of my life according to the nurses at the hospital it costs 800 per infusion thats every 3 weeks, money should not be an issue with screening cause it will cost them just as much if they dont screen and more women are dx with this dreadful disease.

Charlotte e - I did read something about using a new screening technique some sort of thermal imaging, something they could use on young women as it gets around the dense tissue younger women syndrome.

Wont be posting on this thread again as feel put upon just for speaking my mind.

charlotte_e
Member

Re: over diagnosis and breast screening

if screening was given to those with a high risk then i would still have missed out!... Diagnosis of grade3 stage2 at the age of 36, NO family history at all.... The fact is that BC is a very different disease to each of us, and as i said above I guess that there isnt the time to screen everyone (males too), let alone the money, but I know that I would rather have a false alarm, than no alarm!!!..Perhaps there is a better way to do it...

topsymo
Member

Re: over diagnosis and breast screening

I really thought that everyone accepted that giving mammograms routinely to young women was pointless because their breast tissue in more dense and so the results are really inaccurate.

Do people really think that we can be 'screened' to pre-empt every disease and condition that may effect us- what about the hundreds other life threatening conditions that people have to face every day.......and to say that 'money should not be an issue' -----where is the money to come from to create this perfect disease-free world?t

I give up

sarahlousie
Member

Re: over diagnosis and breast screening

Anyone who wishes to be tested for BC should be allowed if thats what they want. Women are getting younger and younger suffering with this dreadful disease, I was 43 on dx and only found it by chance I had an itch on my right breast and it was persistant itch thats what alerted me to my 6cm lump that was obscured by a cyst over the top, hence why they thought it was just a cyst. It should have nothing to do with cost but obviously it does, you could look at it like this the cost of the treatments like herceptin are equally if not more so expensive either way its a no win situation it cost money to screen women and it cost money to treat us, so really money should not be an issue cause its always gonna cost.

If I'd of waited until I was over 50 to be screened for bc I would most certainly be dead, thank heavens for the itch that brought it to my attention. Ironically I had seen a mobile breast screening unit in the town and dropped in cause I did'nt realise you had to have an appt. pre arranged, I was sent away without screening yet something made me go into that mobile unit and if they had of screened me then it may have been just in time before it spread, unfortunately they would not screen me on that day and I wonder how different things could of been. Screen everyone no matter what the age it should be your choice.

Love and light
sarahlousie xxxx

charlotte_e
Member

Re: over diagnosis and breast screening

I wish we could all be screened!.... I had to find my own BC 14 years b4 I would have been called for a routine mammo! BUT of course it is down to money and TIME!.
I would hope that those who do get a mis diagnosis would have the grace to realise that they have been lucky!

katytc
Member

Re: over diagnosis and breast screening

Arguements/debates can be altered topsymo, it's called people power! xx

topsymo
Member

Re: over diagnosis and breast screening

Hi everyone- it was my comment that "advances in treatment are not based on anecdotal experiences"- and I stick by it!
Our comments as patients ARE also of significance and taking part in studies and responding to questionaires etc all help in research- but it is also easy for us to quote from our own experiences and to think that this alters the arguement (eg I would think there are still people alive who have smoked 50 Woodbines a day for 70 years - but I don't think there are many of us who would now disagree that smoking is bad for your health.)
Most of us started to contribute to these forums because it was supportive for us and 'a very present help' at a time when we are at our lowest ebb; we learn from other people's experiences especially those whose symptoms,grades, ages, treatment etc seems similar to our own and hopefully we can sometimes be a help and support to others. ( I am sill waiting to find people whose hair has only partly regrown after chemotherapy but apart from Horace I think I'm the only one who has experienced this - on the forums. However - I contributed to the BCC's most recent advice leaflet on chemotherapy and they kindly modified the wording slighty because of my comments- how's that for democracy?)

I still think the Screening debate is not JUST about money! Screening is very expensive but in the bigger picture not horrendously so: I do think that the money spent on it might be used to better effect -in BC research on genetic targeting etc but it is the question of all this over-treatment that concerns me and the fact that women are not given all the facts before they go for screening. One day people will soon look back on MASS BC screening and be as horrified by all the subsequent over=treatment as I am when I recall the radical,mutilating (and possibly life-saving??) surgery of the 1950s and 60s.

I think this debate,like many on the forums is stimulating and healthy. Because BC is so high profile and unfortunately so common, an issue such as screening is very emotive and it will require very brave medical and political voices to push for it to be reviewed .

katytc
Member

Re: over diagnosis and breast screening

"but advances in treatment are not based on anecdotal experiences"

Advances can only be made with the participation of the patients, anecdotal we may be but this is our experience and our stories are pertinent to the reassessment debate and on this forum. xx

Cackles
Member

Re: over diagnosis and breast screening

Sudden probably daft thought. This posting has provided many salient facts clearly and very well from people who are aware of the advantages of screening but not blind to the disadvantages. Maybe some of them should be sent to the TV and press. We too could bring Breat Awareness month to the publics notice. Hopefully with well thought out answers to the over treating brigade. What do others think, and any ideas on the subject?
Cackles

Cackles
Member

Re: over diagnosis and breast screening

Breast Cancer Screening is very expensive. That is why this debate has been going on from it's conception. It is doubtful if it could be stopped because Breast Cancer is an emotive subject for ladies. No political party would dare try. I for one was not aware of my disease and I was a screening find. Yes there is an emotional trauma for many on recall that were 'over treated'. However what would they think if their cancer had been missed because further tests were not carried out. A lot of research on the emotional cost of screening on benign disease is retrospective. These ladies do go as volunteers to be screened. Screening is there to find problems if there are any. That is the nature of the beast. Just because you are being screened doesn't mean you won't have the disease all the money is being spent on finding.
Yes there might be more effective ways to spend the cash, but it will not be possible to go stop the NHSBSP without great public outcry.
Such is the nature of things. In my experience it is a feather in the NHS's cap. Long may it continue.
Cackles
P.S. It is strange that this subject always raises its head at Breast Cancer Awareness Month . Can it be a good vehicle for those that want to get their views, research, work and names in the press.
What a cynic I am.

topsymo
Member

Re: over diagnosis and breast screening

Thanks for your comments Czechmate- I realized that I might be in the minority with my views!

Maybe I play devil's advocate to some extent because I think it is really important that we try to see the bigger picture where heath screening and health spending are concerned. In these debates it is inevitable that we all quote from our own experiences and those of people we know.
My own closest friend died at 51 from BC 12 months after a clear mammogram whilst routine screening detected MY BC when I had no other symptoms ......so screening failed her but saved my life? Maybe.
I,too had no family history , no palpable mass and would have been considered low risk; I quizzed my onc about my 'early' detection and he said my grade 3 would have shown itself very soon without the mammo. Perhaps screening did save MY life- but advances in treatment are not based on anectodal experiences.

When breast screening was established in the late 1980s the evidence seemed clear - by routinely screening women, cancers detected could be treated earlier and thus more effectively. But several recent studies have shown that fewer lives have been saved than was predicted - and conversely many women have had to face treatment that might never have been necessary.Thus emerging research may well discount previous 'advances'

No-one has so far mentioned the psychological effects of screening; the false positives and false negatives and the women who are left with serious long-term anxiety about their health . Having worked in mental health I know that this aspect should not be underestimated.

We all cope with what life throws at us differently- and if some of us are prepared to suffer BC treatment which may not have been necessary, so be it - so long as we are given the full picture of the implications BEFORE we attend for screening -- which currently is not the case.

The info on the BC screening leaflet reads differently from that which men receive about prostate screening; theirs actually states 'slow-growing cancers are common and may not cause any symptoms or shorten life".
Hopefully the rising level of controversy over breast screening will lead to a more open debate and to more information - which is in all of our interests.
I really do not believe this debate is about cost -cutting. It is bigger than that.

katytc
Member

Re: over diagnosis and breast screening

I know that if it was high risk only for screening, I would not have been seen and that fills me with dread, I wouldn't have be on anyone's radar list.
What happens to the other women/men in the future who stay undiagnosed?
Reassessment of breast screening? Wow there are implications, as ethlydsyl states we are given a second chance and everyone has that right. Technology tells us so.
Does this all mean that say if you are 58 years on diagnosis, you have no screening etc, and you have a slow growing tumour, it takes 10 years to grow to a point where you can feel it, now you are 68, you are referred, your treatment now has to be radical, how does that benefit you? or you may have a heart attack and wouldn't need any bc treatment????? Sorry cynical or what? xx

ethlydsyl
Member

Re: over diagnosis and breast screening

i was picked up from a mammagram with dcis -had no symptoms-had wle and 15 sessions of radiotherapy-if the surgeon had said "shall we just leave it and see how you go on ?" -i'd have said "no chance " - thank-you for my treatment-just been discharged from the oncologist d feel i've been given a second chance x

Lulu34
Member

Re: over diagnosis and breast screening

80% of breast cancers are invasive ductal cancers... this means that this 80% of affected women had DCIS prior to the cancer becoming invasive becoming invasive.

i am pro breast screening as i work in that field so some people may say im biased but having gone through the journey with many patients, friends and family but very few have said they wish they had never been screened or had never found out they had cancer or DCIS.

there is a discussion about whether tubular cancers should be treated too as they tend to be slow growing, low grade and rarely lead to mets.... but it can happen.

breast cancer in the breast isnt life threatening its once it moves out of the breast that it becomes more serious and if we can prevent it from getting out of the breast then i think that is a definite benefit.

Lxx

sheil
Member

Re: over diagnosis and breast screening

Also - just been reading some of the earlier posts. If I'd have based my likelihood of getting BC on family history I'd definitely still be sitting here with undiagnosed BC. My thoughts on causation are infertility treatment - together with taking HRT because I thought with my family history of no cancer I was immune, so I may or may not have been put into the higher risk category who merited testing.

I can't see how the negatives of being over-diagnosed compare in any way to the positives of earlier detection.

S

sheil
Member

Re: over diagnosis and breast screening

Shelley, great post. Exactly my thoughts, no tests are 100% certain, but are better than nothing. I suppose there's a cut-off point where its cost-effective or not - but not somewhere I'm ready to go.
I am also in the group that would still be walking around with cancer without the screening service. Even after my recall I had a good poke around, felt nothing, and went into appointment feeling pretty confident that it was all a big mistake - alas!!!
I do feel I was somewhat 'over-investigated' and my recommendation for bilateral Mx was over-cautious.
But I have very strong feelings that screening needs to stay.

I realise that this is based on credible questions, but what about what is happening in the US and other European countries - do they have similar concerns. I'd hate to think we'd lose the service based on economics, and I'm sure it would be false ecomonics anyway.

And my big question is - did anybody ever die through over-treatment? I'd be happy to have surgery to then find out it was unnecessary, but would hate to use this to deny people - like myself- the screening facilities that exist.

Another rant over.....

S

yamslass
Member

Re: over diagnosis and breast screening

I was diagnosed through the screening programme and had a bi-mx last December. The cancers in each breast were stage 2 grade 2. I had no node involvement but did have one failed WLE. There were no palpable lumps. Was I over treated? I don't know and what's more even if I was I don't care. I am glad to be rid of my unstable breasts. I have a certain amount of peace of mind and that is worth a lot to me. If it wasn't for screening who knows when those lumps (some were very small) would have been detected or if there would have been node involvement.

Going for screening every third year can be a bit stressful. But when you get the all clear (and I got 3 of those before the big one)you can stop worrying for another 3 years.

I really do hope this has nothing to do with money. Women are not forced to be screened so the fact that they do it they must see it as worthwhile.

Shelley61
Member

Re: over diagnosis and breast screening

Ten years ago, my left nipple became red, sore, scaly and had a couple of pin prick areas on it that bled a tiny bit. That made me examine my breasts an extra time - I examined them every month anyway.

I found a small lump in that breast - it wasnt hard or pea like and it was painful when I touched it, in other words everything that they told you wasnt breast cancer symptoms. It felt slightly soft, like the fish oil capsules you can buy.

I went to the doctor, and was seen at the hospital 3 days later. Privately, I thought I'd got Paget's disease. They werent concerned about my nipple, and didnt even document it in my notes.

Mammogram and ultrasound showed nothing wrong. Luckily they did a fine needle aspirate biopsy, and then a core biopsy as the fna showed abnormal cells. This all took 3 months, as they left me as long as 6 weeks between appts. It was a rollercoaster for those 3 months, as they kept saying they thought/didnt think I had bc.

The second biopsy showed DCIS, and WLE and another one to get clear margins, showed up as 4cms of high grade DCIS. But nothing had shown up on either mammogram or ultrasound. They said cos I was only 40 at the time, it was cos my breast tissue was denser.

Then, last year, my nipple got a lot worse - it had never been right since I'd first had the symptoms. I was diagnosed with Paget's disease, and underwent a mx.

I dont know about lessening the mammogram service - I really think they need to improve it. I was told I was one of the less usual cases and that DCIS does usually show up on mammo and u/s. I think they need to improve the imaging so that it shows up better.

And as for stopping mammos 5yrs post surgery, well I had a second cancer 9yrs after the first one. I'm only 50 now, and have just been re-biopsied for a small blemish on my mx scar. It came back negative for Paget's recurrence, and the thing they removed was benign. Paget's is rare, and scar site recurrence practically unknown, but I don't hold any trust for anyone who might say "well your cancer wont return - the statistics are good for you". My circumstances have shown different.

I still agree with mammograms even though they've never shown up my two cancers - anything that aims to detect bc is worthwhile. It does worry me a bit though that I had annual mammos for 5 yrs then every two years for another twice, and now I'm back onto yearly for the next 5yrs cos of my second primary. There's radiation involved in the mammos, but if I were to have a recurrence or heaven forbid another primary, then maybe this time it would show up on mammo, and that's serious, compared with much less serious about having radiation exposure thru the mammos.

In any case, they still need to be promoting the tlc message - touch, look, check yourself regularly and report anything different, etc. Not heard anything about that on the news today.

And what bloomin timing for the mammogram stuff to hit the headlines - it's still bc awareness month for heavens sake!

My rant's over now honest - much love to everyone!

Shelley xxx

katytc
Member

Re: over diagnosis and breast screening

Firstly a debate only excels when there are differing opinions.
Ok, I do not know the stats but as a lay person I cannot understand why if mammos cease for the majority, exactly how will that be beneficial for those who have small or hidden invasive cancerous tumours?
I was not high risk, but because of the screening my bc was found. If screening was not available at the start of the year, I would be undiagnosed and sitting here with two tumours, that would have put my life at risk. The proverbial ticking time bomb.
Are we going to be the lucky ones because of the blanket screening?
What happens to the others? instead of moving forwards I personally think it's a step backwards. The technology is here and that is why we are using it.
I also agree that it is sad that I think it's partly a cost cutting exercise but I'm sorry fact is fact and I think money will be an issue in the reassessment and it would be naive to think otherwise.
Choice, now that is interesting. I followed the surgeon and oncologists lead, they told me what would happen and what my treatment would be, therefore the choice in my opinion was do I have treatment to survive?
Did I even think twice?
I remember vividly seeing the words invasive cancer and literally falling to pieces, you see until then it did not seem real and for the first time I remember thinking I have cancer....
therefore,
What is over treatment?
Who is over treated?
Was I over treated?
Am I missing the point?
I just don't get it at all.
xx

weepetal
Member

Re: over diagnosis and breast screening

I have to say that if it hadn't been for routine screening my high grade 4.5cm DCIS would not have been picked up so early and treatment would have been much more difficult than a couple of ops and radiotherapy.

I would fall into the low risk category if screening were "reserved" for those deemed to be more at risk. I have no family history at all, am not overweight, take lots of exercise and very rarely drink alcohol, which my surgeon told me puts your risk factor much higher.

Doesn't bear thinking about what my chances might have been if I had been relying on professional assessments of whether I should be screened. I would imagine I'm not alone!

CzechMate
Member

Re: over diagnosis and breast screening

Well said Topsymo.

The risks of dying from lung disease, stroke, heart disease are all far higher than of dying from BC. It is not possible to reliably screen for all of these and the value of breast screening is
questionable and has been rightly questioned for a long time.

It's high time there was a full review and screening "reserved" for those with incressed risk, calculated from professional assessments.

I see BCC's comments don't mention the harms of screening, facts which continue to be kept from many women going to screening in blind faith.

CM

topsymo
Member

Re: over diagnosis and breast screening

I guess I will be out of step here - but here goes.
I think it's partly about money too - but also about putting women through very unpleasant treatment when there is a statistical probability that it is unnecessary. The money argument as far as I am concerned is that the millions currently spent on blanket screening might be BETTER spent - eg on targeted screening for those with high risk factors for BC or on more research into why younger women are developing BC etc etc .
Surely there is an intrinsic problem with all screening- what if we were screened for potential heart attacks and then we were advised to have 'preventative' major heart surgery - just in case ...... Where does it end?
There are many other cancers - and many different breast cancers - and many other potentially fatal conditions, but until screening is less of a bunt instrument, no-one is suggesting that the whole population should receive multi-screening.
Screening is fine if the results just show us that we need to adjust our diets/life-styles to avoid an earlier than necessary death but if screening shows up "possible" conditions that require radical, surgery, chemotherapy and rads, as with BC then surely it is not good enough to say that that is what we would ALL choose.
When I was a student in the 1960s pioneering breast surgery was being carried out at Guy's by Professor Hedley Atkins; maybe it saved many lives- I'm not sure - but the mutilating, radical mastectomies that were being performed at that time were horrendous- and yet I'm sure many people thought that THAT was OK
I was picked up by routine mammogram myself and found to have Grade 3 Stage 3 BC - but that doesn't mean that I have to think screening is the be -all and end-all. I still believe that there is a lot of over-treatment; treatment which may well be very unpleasant & which will cast a long shadow over that woman's life- and about which, she may well not have been given the full picture, prior to her screening.
This is a political hot potato- it is such an emotive subject with so many people currently being picked up with 'pre-cancerous' symptoms. There is never a good time to suggest a re-think but I think it is quite right that breast screening is being re-assessed- and rather sad that so many people immediately think it is a cost-cutting exercise.

mandeville
Member

Re: over diagnosis and breast screening

Really agree with Katytc comment about it being money related?? Alarm bells are ringing loud and clear with me. All of us who have posted on here so far have all said the same thing we want early screening because without it we might have gone years with BC without knowing it and then when it is finally picked up its either too late or requiring much stronger treatment and surgery. Why would they think about changing something that is saving lives unless somehow saving money was in the mix.
I agree that anything that brings us into contact with radiotherapy through treatment for BC has side effects but surely the lower doses that are used if BC is caught in the early stages can't be as bad as the additional treatments that would be necessary if a more agressive from of BC was found?
It makes me so angry all of this as it causes us all more worry and concern something none of us need when we are dealing with BC.

katytc
Member

Re: over diagnosis and breast screening

Really very interesting reading everyone's stories, cherub how good is your intuition!!
Can I put the cat among the pigeons and say that I think the whole thing is to do with money, because if you think how much the treatments are costing with the diagnosis of bc on the rise (mostly due to screening), I mean it must be mind boggling.
So if changes, lumps etc are either too small or hidden, does this mean if the change takes place that you (the patient)will be none the wiser because no screening until lump etc is totally obvious, then the treatment will be aggressive and the likelihood of spread will be increased???
I can't remember the stats but think it's 8/10 recalls are benign that then leaves the 2 who do have bc if there are no routine mammos what happens to the 2/10???
It's just not sitting easy with me xx

vodka_girl
Member

Re: over diagnosis and breast screening

I to am very thankfull for breast screening as my cancer was picked up on a routine screening I had no lumps or changes in my breast, but califrications were picked up I've since had mx and having chemo, My onc said it could have been about 3 to 4 years before I would have felt a lump or any changes, I think these people need to speak to the people who's cancer was picked up by screening they might take a different view then, but of course as with anything real people dont count. I feel really angry about all this Grrrrrrr.

cherub
Member

Re: over diagnosis and breast screening

I've been listening to all the experts on the radio this morning and some were saying it's not necessary to go through the trauma of having a benign condition treated i.e. having a fibroid removed. All I will say to that is, I presented with a fibroid, I had the triple assessment and my test results were clear. I requested the fibroid was removed as I just did not like the fact I could feel it. It could not actually be seen. When I had it removed 3 weeks later it was found to be hiding a very aggressive 33mm,Stage 3, Her2+ tumour. Another 3 weeks on I had my underarm cleared and it was in one lymph node, so had started making its way.

That was 5 years ago and I don't like to think where I would be now if I had not said I was adamant I wanted the fibroid removed (I was given the option of it staying there). Call it intuition, but the lump was ringing alarm bells for me, I just felt there was something not right about it.

Unlucky_J
Member

Re: over diagnosis and breast screening

I am very uncomfortable re the news this morning. I have a grade 2 lobular cancer which was to be operated on tomorrow - this has since been cancelled until the 7th Nov. The cancer was picked up during a 3 year routine mamagram. I had DCIS in 1996 which after a biopsy and wide incision I subsequently had to have a mastectomy. I was subsequently told some years later and in a different city that I wouldn't now have to have surgery. This did not help as all you know.

I have been arguing with the powers that be that even after 5 years of being clear anyone who has had breast cancer should be screened every year. Their response was that it would be very rare for anyone to get cancer again.

I am that rare specimen!

jude48
Member

Re: over diagnosis and breast screening

I am so grateful for the screening program... The 11mm invasive tubular cancer was not detectable by physical examination but was picked up my first routine NHS screening. I have had WLE with clear margins and thankfully no node involvement. I have now completed 10/15 of my radiotherapy sessions. I can't believe how lucky I am as I am not 50 until next September so if i had not had a mammogram until late next year who knows how much it may have spread. (it is slow growing but it didn't show on a biopsy 4 years ago for a lump I found that was biopsied inconclusive repeated and then clear)My Mother died of BC when I was a child but as she was an only child and my Grandmother died of cancer late in life I am not considered for the genetic test.
I hope they continue the screening personally.