I read timesonline.co.uk/tol/news/uk/health/article6122814.ece in the Sunday Times today which made me feel rather uncomfortable and I wondered what others think. My initial reaction was to feel that it may put women off going to their screening appointments, which is potentially risky.
Any thoughts/relevant experience?
Hi
I have just read the article that you refer to with great interest. I have indeed just been diagnosed with DCIS ( non invasive and dormant)and have had WLE, will soon have another then possibly a masectomy . For me, I am relieved that they are offering me this treatment pathway. Whatever the research or stats show I will be relieved to know that I am enabled to reduce my risk of BC as much as possible.I would be cross if doctors just wanted to 'monitor 'me. The anguish between monitoring appointemnts would be torturous for me - I just can’t begin to imagine the mental state I would get into with the worry that the ‘dormant’ cells could change at any time. Whilst I understand that the ladies in question have been through a difficult time, how do they know that without their treatment, their journey could have been even more difficult?
As for screening according to high/ low risk I am confused as to how this would work in reality. My Mum couldn’t have been healthier- she had the perfect diet and lifestyle. There was no known history of BC before her in the family. She died at 48.
Even with this happening to my Mum , the consultants thought it highly unlikely that mine was BC on first glance and feel. It was only my insistence of an FNA, when suspicious results were found.
so all in all, I disagree quite strongly with the implications in the article.
Love Freddie xxxxxxxxxxxxx
Sure it’s uncomfortable to think about the possibility of unnecessary treatment for conditions detected by screening.
But shouldn’t women be given the full facts about the pros and cons of screening to decide for themselves whether they want to be screened?
Isn’t it for us, as individuals to think about the possible consequences of breast screening and decide what level of risk we are prepared to accept? I don’t think it’s the role of doctors, the media, breast cancer charities and other people to do that for us.
Hi
As a “DCIS, found by screening, at my first mammogram, age 50” - I suppose that I am one of those who, theoretically, has had unnecessary treatment.
My understanding, and therefore acceptance of the treatment, is that, Yes, there were cancer cells, but they had not moved out of the duct. Would they have EVER moved out of the duct, and become invasive? No one can tell me. I was told approx 30% DCIS DOES become invasive, and standard treatment is removal + rads.
My feeling is - everything has to start somewhere. I could not feel any lump - without the microcalcifications on the mammo, I would not have known about it. Had I been in the 30% group of DCIS - at what stage WOULD I have discovered a lump? AND how far could it have gone?
Personally, I have absolutely no regrets about having that mammo, despite my now wonky looking boob! - with rads to come. It is a very personal thing, but that is how I feel. I have had some “friends” comment on the newspaper report, and almost insinuate I have had op I didn’t need, but when you are in that situation, you have to do what is right for you.
Daphne, completely agree that individuals should have choice, not sure what would happen if someone was to listen to the rationale around DCIS (as it was outlined to me) but decide not to have treatment? In the current climate of relatively standard treatment protocols, would the pressure be on to comply?
I think, in America, DCIS is treated and discussed much more as “Breast Cancer” whereas in the UK, we seem much more to be on the “Precancerous” label.
Interesting stuff! - and I knew nowt about it up until 4 months ago!
Lizzy
Hi
I havent yet read the Times Article, but there was another article this weekend in our Local English Newspaper here in Spain about Cancer. Breast Cancer was specifically mentioned in the article which went to great lengths to suggest that the causes of cancers were more linked to lifestyle than genetics / family history etc. I actually found this quite offensive - I cant obviously speak for everyone, but I had an Aunt who died last year aged 51 of BC, and I am currently undergoing tests having found a lump myself … and both she and I have what I would consider to be healthy lifestyles, exercise, diet etc … I just think they were insuating in the article that if you get cancer its your own fault or your own inability to look after yourself properly …
Looking at some of the posts on this forum I would imagine the huge majority of people would be horrified to have people tell them they have BC because of lifestyle factors!
Sue x
Morning Sue
See you are still waiting!! Still got everything crossed for you.
Yes, agree, whilst there are obviously some lifestyle issues around certain cancers, doesn’t help when articles suggest you have “brought it on yourself” - don’t drink, smoke, eat, do night shifts, do day shifts, avoid sunshine, avoid rain, should just about be OK then!
Enjoy your lovely climate - we’ve had a lovely 5 day stretch, looks like it’s broken now though, still not into May yet!
Lizzy
Hi i have not seen this article but can only speak from experiance, I was a DCIS lady whose DCIS turned to ductal and lobular cancer, seemingly in one year as i was going private for yearly mammos! I have just had a benign lump removed a papilloma which i was told had a 30% chance of turning cancerous! Sorry but once you have had cancer and treatment, anything that could ‘turn’ i want out! I could not cope at the moment with another mastectomy, though saying that if i was unfortunate enough for it to come back i am guessing that i would be begging to have the breast off to give me the best chance possible.
Best Wishes
Suzy
Hi sue, just to let you know i totally agre with you, nothing i repeat nothing we do to ourselves causes Breast Cancer. I did not drink, smoke, eat red meat, was not overweight (am now thanks Arimidex) i went to the gym and never sat out in the sun without a factor 30 sun protection, breast fed my children, all the things they’ tell you to do to prevent it.
My brother in law Jim is recovering from mouth cancer and has had most of his jaw and teeth removed, it was very aggresive, and guess what! He has never had any kind of tobacco product in his mouth in his life and what do ‘they’ say causes mouth cancer, smoking!
No one ever deserves any kind of cancer diagnosis.
Wishing you the best of luck, sue, and what part of beautiful spain are you in?
Suzy
Yep! still waiting Lizzie - feel like an old timer on here now I have been here so long!
I agree with your comment re lifestyle - it has almost got to the point where its difficult to know what we should do !!! eat this, or maybe eat that , can we drink red wine or not ? stay in bed longer or get up with the birds ? … I struggle to get through a normal working week sometimes with the hours I do - let alone worry about all this stuff!
Luckily the weather here is fab again and Im looking forward to the start of FULL summer that will soon give me tons of lovely sunshine until at least September! (providing the newspapers dont warn me off going outdoors of course - just in case , !)
Take care
Sue xxx
Dear Philidel, Read that Times article and it certainly makes one think, it reminded me of an article in The Guardian in February 09 about DCIS and it was said that a third of women in post mortem examinations had undiagnosed breast cancer. They had died from other causes. A group of doctors have called for more monitoring in DCIS and not immediate treatment. So it seems there is a lot of debate going on about DCIS.
Quote: “23 health experts published a letter stating that the NHS breast screening cancer programme doesn’t only identify women who have life-threatening breast cancer.It also identifies women who have breast cancer which if left alone might never appear in a woman’s natural life span”
Guardian 20.02.09
we certainly need more debate and evidence about this!
Best wishes
Leadie
Personally i think there is an important debate to be had about the merits of breast screening. Certainly I am pleased that the NHS is rewriting its leaflet on screening in the light of evidence that womnen are not sufficently informd about the drawbacks as well as the benefits of breast screening.
The breast screening programme has saved some lives but far fewer than some of the publicity would suggest. Screening may be detection but it is neither prevention nor cure.
Breast screening failed badly for me…5 mammaograms age 47-53 lulled me into a false sense of security (lumpy breasts, dense breat tissue…no one told me I was at higher risk of bc…I was just reassured by ‘clear’ results.) Even when I was recalled I was still sent away with ‘cysts’ for 7 months…now I know this is just one anecdote and it proves nothing of itself…but it has made me look very carefully at the scientific benefits of the screening programme as a whole. I worry that lack of progress in finding either causes or cure for breast cancer is being obscured, even covered up, by misleading information about the benefits of the screening programme. Its diversionary in many ways.
Jane
Dear Jane, Interesting reading your post about not being picked up on mammograms, read a few posts here where ladies have had clear mammograms and biopsies but when operated on find cancerous tissue. So you could very well had a lot going on for a long time before they finally found anything. How did they finally diagnose you?
I agree with you re screening and misleading information, it’s just typical on the medical profession not having open and honest information available. I’m sure my oncologist plucked stats out of thin air, they just didn’t add up!!!
Best wishes
Leadie
Hi, I’m one of those ladies who had clear results on the biopsy of a fibroid, only for the surgeons to find a tumour hidden underneath. In my case I’m glad my cancer was found, even if it was a really distressing way to find out about it. I dread to think where I would be had I not gone to the Drs with the lump (probably dead by now as I was Her2+ and had it in 1 lymph node by the time it was discovered).
I try my hardest to get on with life - I know I can’t go back to being the person I was prior to cancer, but I don’t want to be there anyway as my life was drifting aimlessly. I just live in each day as best as I can and since the end of last year have felt able to plan for some sort of future even thought I know there is a possibility it might not be long term. Being bitter would serve no purpose for me. A work associate was diagnosed with a brain tumour last year and they couldn’t remove it all. He has a possibility of only living for another 2 years and they can’t say anything beyond that. He gets on with running his business and his hobby of hillwalking as best as he can and I really admire him.
Google “Spiked Online” and check out the 27th April piece by Prof. Michael Baum “why I’m still a screening sceptic” and make up your own minds.
See the section “The nature of over-diagnosed cancers” This isn’t just about DCIS.
I think that it is perfectly natural for anyone diagnosed with a screening detected condition to want the treatment on offer. But I hope the NHS and Breast Cancer Charities will openly accept that there is overdiagnosis and overtreatment and this will stimulate research into better ways of predicting which cases of DCIS and invasive cancer will do no harm if left alone and which require treatment.
I think improving screening technology is no good unless the ability to differentiate harmless conditions improves at the same pace. Where do you draw the line? How do you know when some screening detected abnormalities are being dealt with perfectly adequately by the body’s defence mechanisms? How do you know whether there’s a risk that the biopsying of a non invasive condition triggers it to become invasive and grow?
Do you want your daughters and grandaughters to be subjected to the same amount of uncertainty about breast screening as there is at present?
Daphne thanks for that will go and have a look now.
Best wishes
Leadie
In reply to Leadie and anyone else who is intersted in my story:
I had my first mammogram aged 47 as my GP identified I had lumpy breasts and thought it would be useful to get a baseline mammogram. It was ‘clear’ and I was relieved. I had another one at 49…clear. The I got called into the screening programme at 50: clear, and again after I’d moved 52: clear. I got myself a false sense of security…no one ever told me that a ‘clear’ mammogram don’t mean much for 6 months later; no one told me or I didn’t listen that ‘knowing your own breasts’ is important. Anway at 54 I got recalled from another mammogram (about 18 montsh after the last one) and this time had the misfortnue to meet one incompetent Dr Lan at Epping Breast Clinic who aspirated some cysts and sent me away with a solid lump he was too busty to nottce. Again, I was delighted…by then pretty confident that I was fine on breast cancer…how well I was being looked after…oh the wisdom of hindsight.
7 months later even I couldn’t miss the lump had grown and I was diagnosed with grade 3 stage 3 locally advanced bc.
I name Dr Lan and the Princess Alexandra Hopsital Trust because they have both been in the public domain and you can google my case. There were a lot of other women let down by that particular breast unit. Following a Healthcare Commission report the Trust apologised and 4 plus years after my misdiagnosis Dr Lan was found guilty of profesional misconduct by the General Medical Council and restrictions were put on his practce.
The last bit of information deviates really from breast screening in general. Most units are very good, most women meet knowledgeable professional doctors. But my experience has influenced my thinking on screening. I think it can lull women into a false sense of security: there are false negatives as well as false positives. I don’t think my bc probably was present at my first mammogram aged 47; nor do I think that the delay in my diagnosis necessarily changed my prognosis (I’ll never know…though I am now terminally ill…but I manage not to be bitter about the expereince…just philosophical.)
I think the main lessons I draw from what happened to me is to emphasise again that screening is not prevention, treatment or cure; know your own breasts; early detection doesn’t necessarily make any difference.
Jane
Hi
Ive read your posts from time to time but never knew your background so I’ve just read your history with interest.I’m sorry to hear of you rough time- misdiagnosis is just so rotten.
I completely understand what you mean about being lulled into a false sense of security. I think when you are in the hands of the ‘professionals’ it is easy to feel assured that things are okay if they say they are.
I found a lump myself and had a FNA. Various people medics felt it and assured me it wasn’t BC at all.The results from the FNA were, I was told that day, clear. SO I skipped out, very happy! However I had a nagging doubt in my mind as I knew the lump was there but was never told what it actually was. Low and behold two weeks later I was recalled as somebody somewhere had looked at the results from the FNA and had decided they were suspicious after all.
So I guess I was very fortunate in that ‘somebody somewhere’ did recheck .I know the breast team in my area are very good and for this I am grateful. I could have easily been missed too.
My misdagnosis wasn’t on the scale you described but it happened.
Love Freddie xxxxxxxxxxxxxx
Jane
Dreadful story - you were badly let down.
I think one of the things that makes these discussions interesting / difficult / challenging - is that “Breast Cancer” is such a huge umbrella term. Something which probably doesn’t register, until it touches you, either directly, or someone close. It’s a broad fit, but with so many sub sections, everyone’s experiences and views, reactions both physically and emotionally, are going to cover such a massive spread.
What’s right for one, will seem totally out of odds for someone else. One of the things I have found refreshing on these forums is a respect for individuals’ feelings - there can never be a right or wrong response to an individual’s personal situation.
And I suppose that takes us to another possibility, which is something we are almost touching on here…does the NHS in general, and the screening programme in particular, use a “One size fits all” approach? Just a thought…?
Lizzy
Hi
Mmm I completely agree , everyone and every case is different. An interesting thought too- are we being treated as a ‘one size fits all’?
Seems like we could be.
I have the currently 'controversial ’ DCIS. However, for me, I will put up with any amount of ‘overtreatment’ to be sure as I can be of it not being there. I fully recognise and understand, that for someone else they would feel that this would be too much for no reason.
I think ,for me, part of my feelings are based on the fact that I lost my mum to BC and she had no treatment at all. She was in denial and kept it all to herself until it was way too late.She did go to the doc’s 4 months before her death complaining of difficulty with breathing. I think this was a cry for help looking back. She was given an asthma inhaler ,but now, obviously it was lung mets.
Perhaps my natural reaction is to go to the other extreme???
Love Freddie
Daphne thanks for the link, excellent article and liked spiked very much, thankyou so much for putting it on here!
Jane RA thanks for sharing your tragic story-unbelievable you must feel very bitter about it all. Did you look at the article by michael Baum in spiked?
Freddiecider- have been following your story and what a difficult position you are in especially regarding your mum and her dx. Yes every story is different on here and everyone has a tale to tell. So pleased that I found this site
Love to all
Leadie