over diagnosis and breast screening

Public Archive
1

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

2

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.

3

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

4

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

5

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

6

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

7

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.

8

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!

9

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.

10

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.

11

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

12

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.

13

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.

14

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

15

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!

16

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

17

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

18

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.

19

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

20

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