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over diagnosis and breast screening
Hi all,
Felt a little uncomfortable regarding the news this morning about breast screening and over diagnosis.
One of the statements regarding this:
"The time has come for a randomised controlled trial to test higher thresholds, such as only recommending biopsy for breast masses larger than a certain size."
I had two tumours both pretty small and was told by my onc that if I had not gone for routine screening, and had postponed it for 1 year I basically would have been a "goner". Her words.
I know not everyone's diagnosis is picked up by mammo but I will be forever grateful that mine was.
I do not know all the technical details etc but would be very interested in others opinions. xx
I am only posting here because of the NHSBSP. Grade three 4 cm multi focal cancer with six lymph nodes and lympho vascular invasion....thank you for giving me a better chance for a future.
i was also picked up by routine screening.. i had no symptoms at all, no lump puckering discharge..i just recieved a recall letter. calcifications were picked up on the mammo , after a further mammo scan and biopsys,i was upgraded to stage one grade 2 invasive ductal carcinoma , wire guided WLE, second WLE to get clear margines. sentinal node biopsy (NO NODE INVOLVEMENT ) thank god , 17 sessions of radiotherapy, 15 to the whole breast, and 2 boosters to the wound, i am now on aromasin fr the next 4 yrs... a year on... i have come a long way , i dont think i was over diagnosed, i am just so very thankfull for everything i have been offered and the treatment i recieved. had i not gone for routine screening .. it could quite easily of been yrs before i found a lump, and im sure my situation would of been very different then.. thank god for screening i say.. angie x
Hi All,
I wasn't picked up by the NHSBSP as I'm too young but feel strongly that publicity like this will do more damage than good!
Surely it is better to have a false positive result than no result at all? Some women who have tumours may use these findings as an excuse not to go for their screening ("there's no point they get results wrong etc") and only find out when secondaries have been found elsewhere!
If a lump is removed that turns out not to be malignant, surely it's removed the potential of cancerous cells forming in the future?
I would know I would rather be in the position that a benign lump has been removed rather than worrying that it was cancerous. I know that BC messes with your head but would prefer a few weeks of fearing the worst than it being too late to have treatment!
Sorry I'm rambling but I feel so passionate about the service NHSBSP provide!
Axx
Hi
I always feel uneasy about headlines like this. In my case I was picked up at first screening mammo.
No lump; no signs nothing to suggest anything amiss.
Went to one stop shop; magnified mammo not conclusive nothing showed on ultrasound & nothing felt on exam.
Biopsy suggested was told possibility of it being nothing & I would have small scar. I agreed; result "inconclusive". Chat to surgeon as they recommended wire guided WLE. But also told could quite well be begnin & would then be noted as "over-treatment". I went with the surgery as I needed to know one way or another if begnin yes a 3 inch scar but relief nothing more. Result intermediate grade DCIS thankfully no invasive; estimate within 10 years may possibly be invasive due to my family history. Elderly aunt about to start chemo; her's may have started as DCIS but who knows with this disease.
2nd WLE to achieve clear margins & 3 weeks rads. Am I in favour of screening you bet even if after first op it was shown to be begnin I wouldn't have felt it was overtreatment. I had clear advice all the way through as to the possibility of overtreatment & I could have not had any op. I am so pleased I did.
I think we should be advised of full facts with screening we can then make our own informed decisions.
Take care
I haven't posted for about a year but like you ladies I was also concerned over the headlines this morning. I was diagnosed with DCIS after my first mammogram in Oct 2009 had biopsy then wire guided WLE then another one to get clear margins then 3 weeks of rads.
I'm one of those who will never know if my cancer might have stayed as it was or could have spread outside the breast. I consider myself lucky that it was found early and acted on straight away. Long may the early screening continue I would rather have gone through the 6 months of treatment than to have carried my ticking time bomb around with me. I'm coming up to my second anniversary in December and have to see consultant and then have another mammogram, yes I'm terrified of doing it but I would rather be seen and know that I am being checked than be left not being cared for.
To all those waiting to go through their treatments hang on in there because it does pass and life does get back to as near normal as it can. Life actually is better because you don't take anything or anyone for granted after BC.
Love to all
Mandeville
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.
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!
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.
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.
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
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.
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.
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
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!
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
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
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.
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
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
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
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
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
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.
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.
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
"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
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 .
Arguements/debates can be altered topsymo, it's called people power! xx
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!
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