I'd be willing to take part in a trial of watching DCIS. I have not had a mammogram or any follow up since I was diagnosed with invasive and non invasive cancer in 2003. This is because I wouldn't do anything if tests showed anything. If I found a lump I might take further action but I'm not having anything else. I would rather take my chances if I get DCIS again
Have just signed in, what an interesting subject, just after I had had my masectomy after being dx with DCIS, after one of my regular mammograms. I was advised to have a masectomy as the findings were two foci of high grade DCIS, one measuring 13mm and the second 5mm in diameter, which turned out to be a non invasive disease and hence no treatment, chemo, rad, or tamoxifen, BUT going onto the forum I was reading that some people were asking the question, is a complete masectomy necessary? I must admit that I had a lot of confidence in all the Doctors that I saw, and especially my Plastic Surgeon Mr Guy Stern at City Hospital, Birmingham. As I chose to have a reconstruction done at the same time as my masectomy.It is now l8nths since my op, but I keep trying to reason, should I have gone ahead so quickly.Was there need for me to have this op, although I came through it all well, and really only suffer a little discomfort from the reconstruction, as I had Back Flap( latissimus dorsi) Still feels a litle tight sometimes. And after all my treatment and all my appointments finished, I am now waiting for my next mammogram in October, which will be exactly two years on,it was suggested at first that I waited three years after my op. but I reqested one sooner,my fear is that it will happen al over again, and will it be cancer this time. The word Cancer was never mentioned to me eighteen months ago, and I feel sure that was what kept me in control.But I have become more anxious as each month oes by.I would like to see some statistics on DCIS
Yes fair point Daphne. And the same applies to being able to evaluate the efficacy of adjuvant chemotherapies on ER+ early stage cancers.
Almost all ER+ women who have chemo will go on to have hormone therapy but many specialists believe that the chemo element may in fact be redundant for many thousands of ER+ women. But how do they prove it? It would be unethical (and probably impossible) to recruit a group of women with hormone sensitive cancers to opt for chemo but no endocrine therapy.
Think you have nailed it, Daphne, the trial would be difficult to recruit for, I think. I am that person - DCIS - would I be comfortable randomised to monitoring?....even with the knowledge I have from my own research regarding the possible over treatment - probably not. I would go down the conventional treatment route.
Big part of this issue, is how would they monitor? You are right - mammography in itself - as it is xrays - can cause problems. Ultrasound is not always the best at DCIS, as it does not pick up the microcalcifications like mammos do. MRI is being investigated for it's role in diagnosis, but the issue there is likely to be that it is over sensitive. I actually had a MRI as part of a clinical trial, following my Dx of DCIS. (seen on mammo, confirmed by core biopsy) The MRI identified a suspicious area, in a different part of the breast - which the radiologist was more concerned about than the original area! Had to go back a week later for further biopsy, by which time the area had changed in appearance, and was put down to "normal cyclical activity of breast tissue". So if we throw MRI into the screening mix, we may have even MORE alarm and unwarranted procedures, due to it's sensitivity.
Not an easy one to sort out!
If there was a Clinical Trial that randomised women with DCIS into those that were offered conventional treatment and those that were actively monitored, perhaps enough women would be willing to be randomised to see what happens after a DCIS diagnosis so that more would be discovered about how to identify disease that won't progress.
This is what the ProTect study is doing for men:
To twist the saying - shouldn't it be a case of what's sauce for the gander is sauce for the goose?
Why isn't there a similar study for DCIS? Perhaps it's more difficult to actively monitor women. The men get a blood test every 3-6 months. It would be undesirable to give women a mammogram that frequently because of the radiation risk. But what about ultrasound or MRI or perhaps blood tests? Perhaps the possible complications of prostate surgery for men (impotence, incontinence) are regarded as more distressing than possible complications of breast surgery. Therefore there's more willingness to find ways of avoiding overtreatment.
The ProTect study information says that there are no plans to introduce screening for prostate cancer in the UK because there is not enough evidence about treatment for the disease and that it has not yet been shown that screening for prostate cancer is a good idea.
If we knew what we know know about breast screening overdiagnosis and overtreatment in the late 80s I wonder whether Breast Screening would have ever been introduced back in 1988?
Without Clinical Trials for DCIS and women willing to be randomised to participate in them, no progress will ever be made on overdiagnosis and overtreatment.
If I'd been diagnosed with DCIS (instead of DCIS & invasive), I don't know whether I would have consented to be randomised into a trial to compare treatment with active monitoring. But it would have been good to have the option.
I had a 1mm "fringe" of high grade DCIS around my invasive tumour - proof, according to my MDT, that my invasive adenocarcinoma began life as DCIS.
Until they can predict with 100% accuracy how an individual's tumour will behave I can't imagine that anyone is going to just wait and see what happens following a DCIS diagnosis. Personalised treatment is on its way (with OncotypeDX etc) but we are a long way from that yet.
Some women are certainly being over-treated at the moment. But what is the alternative right now?
There are thousands of women with invasive cancers having chemotherapy that has no efficacy at all. But they can't yet pinpoint who should and who shouldn't have it - who will benefit from it and who won't. Until treatment can be genuinely personalised it just HAS to be a bit scatter-shot. Surely it is better to overtreat than undertreat.
Daphne, thanks for the information.
To quote the song ...."more questions than answers"!
As you state, Daphne "some" scientists have the theory that "some" invasive BCs can regress........But which? For those of us with DCIS, we are told, it's not invasive etc etc - which, in itself, is reassuring. I would imagine that patients who have a Dx of invasive BC feel they want it removed?
Back to poodles and rotweilers, again! And, I suppose, that is where we are, until research takes us further and these issues can be investigated. Will we ever be in that position? How would we have been treated 20 years ago? 50 years ago? What will BC treatment be like in 20 years? At what point did it become clear there was a genetic component involved? Relatively recently, if we take a long term view.
And another thought - which I hope does not come over as patronising, because it isn't meant that way - it is just sometimes harder to express things written not spoken...
As well as all BCs being different - patients in general widely vary in their need/ desire to take responsibility for their own health. What did I do, as soon as I had my recall letter? - onto internet, and found this site. I have read stuff, thought about it, talked about it. And, presumably, that how we have all ended up here! (Although, thinking back - did NO research AT ALL pre screening! Got the letter, went along!)
But there are hundreds of patients, who feel more comfortable handing responsibilty to the medical profession, who would actually feel more stress if handed all the available information, and making decisions. The "doctor knows best" is still a strongly held view. Most people are somewhere in the middle - need some information, but overall, accept the treatment as suggested?
Information will keep coming, as the screening programme goes on longer - the statistics will highlight positives and negatives, and of course, can then be "spun" depending on what slant an individual, or a body, wants to portray.
I think, in general, doctors do what they think is best, with the information available at the time. Is that what they would have done 15 years before, or 15 years in the future? Very probably not.
This is a long post with lots of things to think about.
The NHS Breast Screening Programme's stats on screening detected cancers and DCIS are in NHSBSP61. Just Google it and you can read it.
Re 10-50% of invasive cancers being non life threatening, I don't have any detail on that, but some scientists have the theory that some invasive breast cancers can regress.
Seems logical to me that there could be something in this. Our bodies have evolved defence and immune systems to kill off cancer cells that are sometimes created as a normal part of tissue replacement. I think screening programmes send the subliminal message that our bodies are pretty useless at dealing with very early stage abnormalities. But there's no clear evidence to back that for breast disease because active monitoring vs treatment has never been studied in a proper clinical trial.
Lifestyle has been mentioned in this thread. I believe that it is also relevant that we grow up in a more oestrogenic environment (through human activities) than previous generations. Maybe this is contributing to the increased incidence of breast cancer and the fact that doctors are now seeing a higher proportion of hormone positive breast cancers relative to hormone negative. There is a theory that progress in diagnostic pathology might partly explain this increase in proportion of hormone positive.
According to NHS Choices:
"Many of the harms associated with screening relate to the uncertainty surrounding a diagnosis of DCIS that has been detected by screening. Only half of the women diagnosed with DCIS will go on to develop invasive disease. However, it is not possible to know who will develop it, so all women with screen-detected DCIS are treated in the same way with surgery, radiotherapy or chemotherapy. For women who would never have gone on to develop breast cancer in their lifetime, these are
unnecessary treatments and the harms associated with them outweigh the benefits".
Therefore in the NHS's own words, a woman diagnosed with DCIS is less likely to develop invasive breast cancer than a woman who carries a defective BRCA1 or BRCA2 gene (50-80% chance of developing invasive breast cancer in her lifetime) - Cancer Research UK
It's interesting that NHS Choices says that only half the women diagnosed with DCIS will go on to develop invasive disease, yet NHSBSP61 says that 69% of DCIS diagnosed in the UK is "high grade", implying that all these cases would become invasive if left untreated. Presumably whoever wrote the NHS Choices Information has not read NHSBSP61.
Correct me if I've got any of this wrong, but women with a suspected family history of breast cancer can choose whether or not to be tested for defective BRCA1/2. They are counselled before testing. If found to carry one of the defective genes, they can choose to be monitored and may wish to have prophylactic mastectomy. They are given information and counselling every step of the way.
By contrast, previously healthy women diagnosed with DCIS (a condition they will have never heard of if they have only read Breast Screening - The Facts) at screening are steered towards surgery and possibly radiotherapy and hormone therapy (strange that NHS Choices mentions chemotherapy for DCIS, but not hormone therapy). Mastectomy (and indeed lumpectomy) for DCIS is effectively prophylactic surgery for some women, but handled in a very different way to prophylatic mastectomy for BRCA1 and BRCA2.
The result is that many women treated for screen detected DCIS naturally believe that their lives were saved. However another way of looking at this is that the surgery has virtually eliminated the risk of them developing invasive breast cancer that, according to the NHS, they were at less risk of developing than someone with defective BRCA1 or BRCA2.
This challenges my sense of logic and fairness because of the lack of full and impartial information given to healthy women to enable them to make an informed choice as to whether to accept their screening invitation.
Contrary to reports in February, the NHS has NOT ripped up Breast Screening - the Facts. It is alive and well and still says nothing about DCIS
If women want to read about DCIS, there is information on the NHS Breast Screening website. But that's no use to women who don't have access to the internet.
As someone who had no palpable lump, thickening or any other symptom, I can only say I was 'grateful' that my Grade 3 aggressive cancer was picked up by 'routine ' mammogram.
I have always been healthy and there's no family history of BC in my family so I had tended to be somewhat sceptical about sceening (especially as a close friend of mine died from BC - detected 6 months after a 'clear" mammogram)
I would be interested to see the stats for BC, as opposed to DCIS, detected by routine sceening.
In that very interesting Spiked essay Baum makes the claim (referenced from Should I be tested for Cancer?, H Gilbert Welch University of California Press, 2004) that "there is now clear evidence that anything between 10 and 50 per cent of invasive cancers detected and treated radically as a result of screening would never threaten life."
I would really like to see the data that supports this. While I can understand that treatment of pre-cancer DCIS may have a question mark over it, I am surprised to hear that INVASIVE cancers may also be non life threatening. And 50% is a massive claim.
Does anyone have Welch's book? Or any further information on this?
I would like to see much more research done on precancerous cells and the role of the immune system. why is it some people can contain potentially cancerous cells and live along side these without developing full blown cancer?
The immune system is fantastically complicated and so little is really known or been researched about it.
Salopets I echo your sentiments regarding genetic disposition. They have barely scratched the surface regarding genetics and disease and yet they speak with such fullsome pomposity on the issue as if it were all 100% cut and dried. Lifestyle and environmental factors may increase risk of developing certain cancers but I firmly believe that a genetic propensity to develop cancer exists in the first place. I am the carrier of a chromosome problem and as such am under a geneticist (with regard to fertility problems). I know that my problem carries an increased risk of developing leukaemia. Is it connected to the BC? They simply don't know yet - that is the answer you will get from the geneticist.
Why the hell don't oncologists and geneticists speak to one another?
I am torn over the issue of screening. I had a lump 12 years ago aged 32. It was a benign lump with "abnormal cells". Maybe today they would have a better path status for it - maybe it would be called DCIS - but back then it was simply described as benign. I assumed that following its removal I would be closely monitored and offered screening. Instead, the surgeon advised me to wear a good bra (tsk!) and be "breast vigilant". When I suffered breast pain 5 years later and demanded a mammogram I was treated like a buffoon and bullied by a truly obnoxious surgeon who told me that I was taking up the time of women "who actually have cancer."
Boy would I like to meet him now.
When I was diagnosed last year the tumour appeared directly beneath the scar of the "benign" lumpectomy. Clearly the 2 events were connected and I regard my cancer now was a direct failure of that primary treatment.
When I have discussed this issue with my surgeon and question why I wasn't monitored a bit better she shrugs and says "Well, you found it anyway." True - but potentially it could have been found earlier.
Had I been offered annual mammograms from age 32 I wouldn't have hesitated in taking them. And maybe I wouldn't be in this position of having invasive cancer right now.
I think many doctors are pretty honest that breast screening harms some people as well as saves some lives, but perhaps they need to be more forthcoming about saying so when decisions have to be made and not wait to be asked by well informed patients.
They don't know which early cancers and DCIS will progress if left alone and which won't, so clinical protocols say that they have to recommend treatment. Though it jars somewhat with the Hippocratic Oath "first do no harm" as sometimes they will not know whether treat or leave is the least harmful option. It's not just physical harm either. A patient could be psychologically harmed by no treatment or they could be harmed by treatment - body image, relationships etc.
I think the way forward is for doctors and patients to openly acknowledge the imperfections in breast screening and press for research to better identify abnormalities that will threaten life if not treated. Also there are financial benefits to the NHS if overtreatment and any complications that result could be reduced.
Dear All, what an interesting debate and we should be having more of these on the threads!
What is disturbing to me is the general opinions that I hear about screening, like... it's good that it picks it up so early..aren't we lucky that there is screening....the public have been fed certain information about screening and believe it.
It 's the old story of the medical profession believing THEY know best and with-holding a lot of information. I found this right through my treatment, being TOLD what was going to happen and being treated like a little girl who is unable to make informed decisions!!!
Further comment on Prof. Duffy's implication that breast screening is "preventative medicine". That's not what the breast screening invitation leaflet that the NHS is supposed to be ripping up says:
"Does breast screening prevent breast cancer?
No, breast screening only helps find breast cancer if it is already there. You should be aware of any changes in your breasts because breast cancer can develop at any time. Some women will develop breast cancer before their first mammogram or between mammograms."
Prof. Duffy's prevention strategy seems to be that you have to screen many women to prevent the deaths of relatively few. That's not disease prevention, that's death prevention and it's the number of deaths prevented relative to unnecessary treatment and unnecessary worry that the experts disagree on.
I've heard the screen many to save a few described as "human shield". People who believe their lives have been saved by screening will naturally be grateful for it. Whether the "human shields" that make up the screening numbers are comfortable in that role (which may lead to their lives being saved or may subject them to unnecessary treatment or false alarms) we don't know because nobody's bothered to ask them.
It's not really a question those of us who've been diagnosed with DCIS or invasive cancer can answer. Our experience informs our opinions of screening. It's a question for the women who believe they are healthy who are invited to screening.
That is what I suspected which raises yet again the issue about user voice. Unless users who are questioning are represented, all we’ll ever see is a ‘safe’ approach. So how do alternative views get heard? Nowhere of course because unless we have the time to join together and speak out, nothing happens. Grrrr!!!
LizzyM - I totally understand where you are coming from. But if we get to a point where we can distinguish between the ‘poodles’ and ‘rottweilers’ and have targeted treatment, surely approaches to screening and treatment will be entirely different. Will we not find therefore that we won’t be left in the position of thinking I have this thing that needs dealing with because we will know what the potential of this ‘thing’ is and can therefore make more informed choices?
Informed choices! Hmmm … I would love to feel far more in control about what happens to my body and it’s from this perspective I would love the BC charities to represent us. Clearly none of us want to see anyone at risk, but why are we scared of targeted approaches?
Daphne, thanks for all that info. I will read gradually over the next few day.
The document NHSBSP61, screening for Breast Cancer Past and Future is available on the NHS Breast Screening Website. It says that for every 14 000 women in the age range 50–70 years screened
by the NHSBSP three times over a 10 year period, the associated exposure to x-rays will induce about one fatal breast cancer.
Therefore it follows that reducing the age of breast screening will increase the risk of x-ray induced breast cancer.
It also says "The International Agency for Research on Cancer has concluded that there is only limited evidence that screening women aged 40–49 years by mammography reduces their mortality from
breast cancer. Further research on the effectiveness of screening at this age is under way within the NHSBSP"
"The IARC (International Agency for Research on Cancer) working group drew attention to the biological plausibility that mammography may be less effective before age 50 because the mammographic density of breast tissue in premenopausal women (usually aged under 50) is greater than in postmenopausal women (usually aged over 50)"
It is well known that Mammograms are not particularly effective in picking up abnormalities in dense breast tissue.
To see a debate between experts (including Dr Peter Gøtzche and Professor Stephen Duffy) and patient advocates, go to the BMJ Rapid Response:
Also see Professor Stephen Duffy's comments on the Breast Screening Debate:
"Professor Duffy makes two key points in his commentary, the first of which relates to the paper's focus on the large number of women who must be screened in order to save a life.
He points out that this is the case with vaccination, cervical screening and many other disease prevention strategies, and that "if one is in the business of preventative medicine, one has to accept this as a fact of life."
Since when did Breast Screening become "preventative medicine" rather than early detection? Vaccination against measles can be justified on the basis that most children will get measles if not vaccinated. I think it is disingenuous to compare Breast Screening with vaccination.
Let's not forget that most women who have breast screening and also those who present with symptoms DON'T have invasive breast cancer or DCIS. I think it's up to each individual woman to decide whether she wants to accept breast screening as a fact of her life.
Jeannie, your experience is shocking. What doctors don't seem to recognise is that you know your own body and you get a sixth sense about these things sometimes. I know they must see a lot of people who panic over nothing, but a quick check on your notes will tell them if you're the panicky sort. You must be really cross to think that you could have been treated a lot sooner if only you'd been taken seriously.
I was 52 when called for my first mammo last Nov and I count myself very lucky. If I had been called at 50 they probably wouldn't have detected anything and the cancer would have been present for another year when it was found by the second one at 53. By then it could have spread to lymph nodes and I would have been looking at chemo.
I think one of the problems with breast cancer is that it takes so many forms and it seems to be the more unusual ones that are harder to detect or don't form the lump that we, as women, are all taught to look for.
I hope all is going well for you now Jeannie.
Well said Salopets. Sounds like you were caught at your first routine mammogram which puts you at around age 50. I didn't have a lump either but I did have swelling, thickening and armpit lumps and was refused a mammogram on three occasions over a four year period being told I had nothing to worry about, I didn't tick any of the boxes except that I haven't had children, and as I was under age 50 I wasn't entitled to a mammogram. My lobular breast cancer wasn't picked up until I put myself into the system at 50. By that time I had had it for many years (confirmed by my oncologist)and it had advanced into 15 out of 19 of my lymph nodes. It was only by mammography that my lump was picked up as I still didn't feel a lump. I would like to see the NHS screening age reduced lower than 47 - which is the age women will be able to gain access to the system in the next few years. Also, GPs need to be better trained in recognising the different symptoms of breast cancer - not just lumps. Lobular breast cancer often presents itself as a thickening of the breast tissue and inflammatory has its own characteristics.
Wishing you all well.
I agree, it's a very interesting article, but for me it raises more questions than it answers. I have invasive lobular cancer that was detected at my first routine mammogram last November. I couldn't feel the lump (no one could), which appeared to be 5mm on the mammo and ultrasound, but which in the event turned out to be 15mm. That is the problem with lobular cancer - it does not form a lump and I am convinced I would have gone on for several more years without knowing it was there, were it not for the screening. As it is, I have no spread to the lymph nodes and am able to avoid chemo and go straight to tamoxifen and rads. I have no doubt that the screening meant at least that I have required less aggressive treatment and at best it may well have saved my life.
Prof Baum goes on about assessing risk before giving mammograms. Well, according to the evidence I have read, I had only one of the 11 risk factors, ie, that I had not gone through the menopause before I was 50. So, would I have been offered screening? I don't know, but on that evidence, quite possibly not.
Secondly, he goes on about giving lifestyle advice to those who have a slightly elevated risk. Here we go again. My lifestyle is very healthy thank you very much. I have never smoked, been overweight, drunk too much, been inactive etc etc. and I still developed bc. Just because you have a healthy lifestyle, it doesn't mean you are not going to get bc! I read a news article on the internet recently that indicated that doctors thought only 5% of cancer was genetic, therefore 95% was brought on by lifestyle. I would answer this by saying that just because they have not found a genetic reason for my bc, it doesn't mean there isn't one. My mother died of cancer at 46, my grandmother died of cancer, as did my great grandmother. I have an aunt who died of breast cancer. That doesn't put me in the "genetic spotlight", but I think it shows a family propensity towards cancer, which I believe is why I have bc. So, yes, we should be encouraging people to have a healthy lifestyle, but it is not the universal panacea that doctors have a tendency to try and make us believe it is.
Interesting! - and thought provoking article, thanks for flagging it up.
Jane, you are right, it does have a "big picture" implication, and I know you are very informed on the politics (maybe not in the strictest sense of the word, but you know what I mean)surrounding BC.
How does it make me feel, for my own situation? ...Yes, as stated before, with low grade DCIS, the sort that may well only have been found if I had a post mortem, after dying from a totally non BC related cause. Might never have caused any problems....
But, big BUT, once you know it is there, would I have happily "just" monitored it? No, personally, (and, as we've all said - this IS an intensely personal experience) I am glad to have had the op, and will have the radiotherapy.
So, should I have been screened? Without it, I might never have known - might never have had problems..
Too many ifs, buts and maybes for me, I'm afraid.
One thing I did spot in the article - daughters of DCIS patients having difficulty with insurance cover, seems ironic when critical illness insurance DOESN'T pay out on a Dx of DCIS! Insurance companies having cake, eating it, and making trifle out of it?!
Glad you started this thread, Phili, Thanks
Just a quickie in response to your important points Gill.
My feeling after 5 years plus noticing what the charities do (and don't do) is that the major bc charities in the UK (BCC and Breakthrough) over egg the importance of screening...its a safe cosy issue...much harder to take on radical issues like the slowness of progress in getting adequate treatments and cure.
What a powerful article. Thanks for the link to it. I’ve been very pro screening because of my personal circumstances ie. I got caught by the screening programme at the age of 53 which detected DCIS and Grade 2 invasive cancer. I went through the usual rigmarole ie mastectomy and chemo. I’m in the process of being diagnosed in my other breast now but don’t yet know if this is anything or not.
Reading this article though I completely take on board his comments and to consider the ‘poodles’ and the ‘rottweilers’ is of huge importance. We’re talking aren’t we about targeted diagnosis as well as hopefully more targeted treatments in the future. This has to be the way to go.
Screening appears to be such a certainty but it’s not. I suspect though it’s people like us who have gone through or are currently going through the diagnosis or treatment who are taking on board his comments rather than the wider public, many of whom get their info through the media headlines. Even within the breast cancer community there will be a huge division. However, I believe as mentioned in the article that the breast cancer lobby needs to wake up … but who is the breast cancer lobby? Is this the charities? If so, how are user voices being recognised and used? What if any impact do we have regards our opinions? I presume if we question screening we're in the minority and villified by one and all.
Hey Jane, Daphne and all I haven't 'met' before, I'm glad to find you relatively well and still active on these boards.
I just came on to post the spiked article but I see you're all way ahead of me. I was interested that Prof Baum thinks even IDC could be left alone because cancer cells do not follow mathematical models of progression. I too have a great deal of respect for his position on screening and I'm a big fan of spiked online so I'm thrilled you all like it. My presentation was symptomatic (bloody discharge from the nipple) but I have to wonder if even the few escaping metastatic Her2+++ cells from my IDC found in a sentinal node biopsy which earned me chemo after mastectomy and then a year's Herceptin really warranted this barrage but feel much less qualified to make such decisions than my surgeon and oncologist so must be content.
The spiked link for anyone interested in following it up is http://www.spiked-online.com/index.php?/site/article/6563/
Very best wishes to new posters and old friends.
Thanks, Daphne, for the link. A really well-written, intelligent piece I thought. And I did have a dip into other articles and have bookmarked the site for future reference. Brilliant site.
And Jane, I don't think it's at all diversionary to tell your story as personal experience is an especially valuable part of these sort of serious discussions. Our personal experience is why we're all here after all!
I found my lump myself, so haven't experienced the screening system, but still see it as an important part of the tapestry that makes up the whole system of breast cancer treatment. I'm really enjoying (if that's the word given all our circumstances!) reading all the input here.
Yes Daphne thanks for the link to this latest Baum article. I have a huge amount of respect for his ideas and rememeber being impresed by seeing him speak somewhere..was it a Breakthrough through event a while back???
Leadie...strangely no I don't feel bitter...angry yes about getting breast cancer at all..but I really think the terrible error may not have affected my prognosis. Sure I'm angry I got breast acncer but its that I loathe more than the misdiagnosis.
I tell myself strange maybe pluses about the misdiagnosis: like because of timing by the time I was diagnsoed in October 2003 I was able to have taxotere after surgery (having had AC before surgery...7 months earlier I couldn't have got it at that time)...and I did get two and a half years in NED which might have been the taxotere..or might not...never know. I had an independent oncologist's report who reckoned the misdiagnonis might have reduced my 10 year survival down from average 42% to 18%. I won't live (bar a miracle) to 10 years now...but maybe I wouldn't have anyway. I pursued the case doggedly...I didn't have a compensation case because under Englsih law to get damages you have to prove that but for the negligence you would have had more than 50% chance of 10 year survival and I didn't. So I'm proud of myself that I pushed for a Healthcare Commission investigation and a GMC case..though my little case was only part of a much bigger scandal. I was a witness in September 2007, 4 and a half years after misdiagnosis and I sat in this big room for an hour and half telling my story, with the shamed doctor listening...and I think he was sorry though I felt cold and distant towards him...or at least pretending he was sorry and apologising through his barrister to me probably saved his job, and I'd rather he had lost it. And it wasn't just him...it was the whole system at the hospital and I am more angry with the senior managers who intially tried to cover up my case and belittled me during a local investigation. I did it so no one else at that hospital might have to go through what I did...it was cathartic for me.
Its great to see serious dicussion about screening on the boards and I am being a bit diversionary in telling my little story to a new generation of posters...its still cathargic particlulary at sad times when friends are dying. Daphne and I are are very old lags on these boards and its great seeing new names joining in on the debate..though I bet we all wish we were discussing something else.
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
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???
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.....?
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
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.
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?
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.
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!!!
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.
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"
we certainly need more debate and evidence about this!
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 ,,,,,,,,, !)
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?
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.
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!
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!
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!
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.
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
I read http://www.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?