Daphne - very good article, thanks for the link. It does through up lots of questions. Firstly, the issue of informed consent. Most women, unless they have access to more detailed research, will think that they should be screened, regardless as they don't understand or have knowledge about the risks involved; both the physical risks such as the radiation involved in the case of breast screening and possible damage to the cervix with too many cervical smears and also the chance of overtreatment should a "problem" be detected. Doctor always knows best! In dentistry, we take bite wing xrays every two years to screen for asymtomatic problems. We then find a problem on the xray. Then we are left with the dilemma. Do we treat or do we leave alone. If we leave alone, it begs the question, why screen in the first place? If patients are in a low risk group, are the problems detected likely ever to manifest into serious ones? I have declined having routine screening xrays done for me and my sons as we are all very low at risk.
The other issue regarding screening is labelling someone with a disease they probably haven't got. Once dcis is detected, however small and regardless of whether you go on to treatment, then you must declare this to insurance companies, occupation health etc etc and face the consequences.
There are a few women on this forum who have put very good arguments up for not having mammograms, mainly because of the reasons within the article. As someone who has had DCIS, detected by self examination, I am not sure whether I want regular mammograms.
Clearly, the overiding message is the need to provide people with adequate knowledge so they can make a decision for themselves.
This article in the BMJ by the President of the Royal College of General Practitioners is interesting (to read the full text, you need to be a subscriber, but the reduced text gives a flavour). The rapid responses to it are also interesting, particularly the one from the lawyer:
Those of us who have had breast cancer form our views on the Breast Screening debate based on our personal experience, but Breast Screening is aimed at women who have no reason to suppose they have breast disease.
The actual risk to women of developing breast cancer needs to be put into perspective. Most women do not develop breast cancer. Approximately 90% of women who present with symptoms at breast clinics do not have breast cancer. These aren't reasons to be complacent, but I think it is perfectly reasonable for a healthy woman to weigh up the perceived benefits of screening - opportunity to identify DCIS and cancers that may cause her harm and have cancer treatment, against the harms of screening - cancer treatment for some conditions that would never harm the woman during her lifetime and quality of life issues caused by the aftermath of treatment that may have been unnecessary. Yes there's the problem that cases that could be left can't yet be safely identified, but life is full of uncertainties.
People who are ill are told of the potential harms of the treatment as well as the benefits, and when offered surgery they must sign a consent form. Yet healthy women are denied the opportunity to provide informed consent to be screened because they are not given full information on harms as well as benefits.
If a healthy woman has access to unbiased information and chooses not to be screened because she would rather wait to see if she develops any symptoms of breast disease, it seems to me a perfectly reasonable decision. Whether or not I would make the same decision is irrelevant. What's important is that screening invitations are handled ethically and women get the information they need to make up their own minds.
I agree age is certainly a factor - being diagnosed with DCIS at 50 could be quite different to being diagnosed with it at 70 in terms of prognosis. This raises the question of whether Breakthrough Breast Cancers' campaign to ensure elderly women receive the same treatment options as younger women might not actually be quite as helpful as it seems if clinicians, fearing allegations of age discrimination, steer more elderly women to have treatments that they don't need leading to destruction of their quality of life and maybe premature death.
I think we need to remember that the majority of women detected with DCIS on Mammogram will be older and an older woman's risk of cancer developing from DCIS is much lower in general than a younger woman. If you read research papers on the treatment of DCIS, the recommendations for more radical treatment is for the under 50's. My type of DCIS was within a cyst so it presented as a lump and as I was in my forties, I hadn't even started the screening programme. The doctors said the type I had was rare and normally found in women in their 80's and had I been that age, they would have watched and waited as it grows slowly and probably the only treatment offered if any would have been WLE, certainly no radiotherapy. So, there is world of difference in the treatment planning for younger women for obvious reasons and I certainly would not have left mine up to chance after reading the research.
Hi Sallie, Mandy and Topsymo,
I keep "dipping in" and reading these threads on "Overtreated" - as mine was "just" DCIS, I've had WLE and rads.
I probably, theoretically fall into this overtreated group, but I completely agree with Mandy, how could we "wait and see"? And as others have said -until the WLE, or the mastecomy, has been done, it cannot be known for definate if there is any invasive disease.
A friend of mine, who is a GP, had the same route as me - 1st mammo - DCIS, she had surgery and rads, and had no doubts it was the best thing to do.
I suppose it will be difficult to find a way to show which DCIS needs treatment, without large numbers of women being prepared to form that "wait and see" group........
Stay well, all!
I had my first mammo last July 07,I had no lump or signs of bc,although I was off sick with work related stress and I still am unsure if this could have been a symptom of my bc.
My results of mammo was a Grade 2 cancer I had wle and clear node removal,I was offered chemo as a precaution due to ??vascular invasion,and all I can say is that I am so pleased I had this treatment offered to me and I went through with it,although at the time it was not an easy decision or easy treatment.
Everyone should be given the choice if needed then any individual can make their own decision.
I am one gratefull person.
As someone who was in really good health and entirely without symptoms ( no palpable lump etc etc) I reacted with more than the usual disbelief when I was recalled after my 3rd or 4th mammo ( I was 65). I was told the cancer was early and smallish and WLE and radiotherapy was the planned treatment.
However after SNB and path. reports my prognosis had to be 'adjusted' as my tumour was found to be an aggressive Grade 3, Stage 3 with lymph involvement - so I've since had chemo , rads etc - now on Arimidex)
Despite losing 4 friends to BC and knowing a great many more with it - I was SO sure that I wasn't the cancer type! (how stoopid can you be?!)
I shall never know how long it would have been before I had 'symptoms ' but assume that my prognosis would have been worse if another few months - or even weeks, had elapsed.( No-one I have spoken to was prepared to speculate on 'how long')
I wonder how many other women are like me- everyone who posts seems to have had some symptoms or suspicions pre diagnosis- or to have been picked up by mammo with DCIC at an early stage?
Hi I am new to this site. Thank you everyone. It is good to communicate with people who are going through it and those who have come out the other end. I had a mastectomy at easter and am just about to have my 3rd chemo session.
I agree with a lot of what you are all saying. Everyone has to weigh up their individual situation. The lady of 89 should never have been operated on. Surely the risks of surgery were too great. My Grandmother was in a similar situation except that she had radiotherapy and not surgery. After a few agonising sessions my mother pleaded with them to stop. But then also a friend of mine died at about the same time as I was diagnosed, she had the mastectomy but no further treatment. 3 years later she devoped secondaries. I am 57 this year and although I did not want chemotherapy I felt the guilt I would have felt if the cancer returned and I had not done everything I could to prevent it would be far worse than the sickness, nausea, tiredness etc I am experiencing now. I do feel very fortunate to be living now and in this country with all the medical advancements that are available.
Sorry this all sounds rather pompous. I also found it hard to convince myself it was all necessary. I was fit and well and could not believe I had cancer at all. These things don't happen to me. I would have tried the healthy living approach but could not risk it and anyway how do we reduce stress.
Please excuse my spelling and use of words I am experiencing the vocabulary fog.
Thank you everyone.
When I was first told that I had DCIS and a mastectomy was the recommended solution, I had a hard time trying to convince myself it was necessary. I was soon bombarded with information from family, friends and acquaintances alike...You dont need your breast removed...they said. All you need to do is give up dairy said one, drink pureed fruit and vegetables said another, stop wearing a bra, stop using underarm deodorant, stop dying your hair, wearing makeup and skin lotions, give up drinking, give up smoking, give up stress, give up life!!! So I had two options...give up everything and look, smell and feel like someone whose life was over or get it removed!
More well meaning individuals then went on to give examples of people who were vegans all their lives and still got BC, people who never drank, never smoked, never dyed their hair....and still got BC. People who tried weird and wonderful diets after diagnosis and still died.
It became very clear to me that nobody knows what causes it, why some people survive it without treatment or what the percentage of DCIS diagnoses go on to become invasive and what time frame it may occur in. I couldn't face the idea of getting painful breast mammograms and biopsy's every year and spending 3/4 of the rest of the year wondering if something was growing inside me. Someone else kindly told me that mammograms cause breast cancer!
I have 3 young children who need their mother more then I need my breast...its simply not worth the risk and the stress of worrying about it. I have it done now (6 weeks ago).
Sadly the removal of the majority of DCIS diagnosed breasts means their isn't a lot of people to study in terms of how many cases of DCIS actually go on to become invasive and how long it takes. Studies have been done but the results seems to vary widely. I hope that in time medical science will have better and less invasive diagnoses tools, and more of us will be able to wait and see...til then...no regrets about my decision.
When I was in hospital, there was an 89-year-old woman who had had a double mastectomy. She'd found a tiny lump in one breast and a mammogram identified DICS in the other. She had been in for 3 weeks. She was in extreme pain, crying all night saying she wanted to die. I later learnt she got her wish - she died 2 weeks later, still in hospital. She came into hospital relatively fit and well - five weeks later was dead. I'm troubled by the idea of "overtreatment" - the 30% of women given treatment following mammograms who probably don't need it. It's a given that identifying dangerous cancers from mammograms is a key priority. But in the meantime I think doctors should take a kinder, more holistic view of patients and give more realistic advice. I imagine that a frail 89-year-old is more likely to die of something else rather than breast cancer and telling her she needed a double mastectomy was just plain cruel in my view. Of course, she's an adult and gave her consent freely - but who of us really know what we're in for when we sign? We rely on the professionals to have our best interests at heart and give good advice. I wouldn't subject a dog to a possibly unnecessary operation, let alone an elderly woman!
I agree with Msmolly re the systematic review from BMJ. Its all very impressive, this meta analysis of loads of studies which simply highlights that more research is needed into determining who is at at risk of developing invasive cancer and who isn't and furthermore, which invasive cancers need aggressive treatment. When regular screening is used, overtreatment is always going to be a problem. This was shown clearly with dentistry in the 70's - the more often a patient attended the dentist, the more likely they were to have a filling as it was thought better to be on the safe side and fill a tiny hole than let it develop. We now know which teeth need filling and which can be left alone. OK, I appreciate that losing a tooth is not in the slightest way comparable to losing a breast but my point is that those of us who are currently screened are unfortunately stuck in the early days of breast cancer treatment and in years to come this won't be a problem. Cold comfort for us lot now.
Hi, I am one of the women referred to. I had my first routine mammogram at the age of 51, I was recalled for a biopsy and told I had pre cancerous cells that "may or may not develop into breast cancer". I was advised to have a mastectomy. At one stage I did think maybe I shouldn't have a mastectomy and wait to see if it did develop into bc but I didn't want to feel like a time bomb waiting to go off.
After my mastectomy I got my results and I was told that I did have a 10mm grade 2 tumour developing. Thankfully I didn't need any radiotherapy and I now have to go back for 6 monthly check ups. This may sound mad but I am glad I did have a tumour developing because this confirms I did make the right choice. If I hadn't had that tumour then I would have been getting in a state over this report and feeling like I had acted hastily.
I suppose until the day comes when they can predict who will definitely go on to develop bc then we will have to err on the side of caution.
When I read what some of the ladies on these forums are going through I feel I am lucky. Other days I don't feel so lucky....
Love to everyone
This is the link to the full text of the study from the BMJ. Accurate reporting of this study in the media (including the BBC) has been pathetically bad.
The study points out that while people accept that DCIS may never develop into a life threatening condition it is hard for people to acknowledge that some invasive cancers may also be non life threatening.
This is all very interesting but until they can predict with 100% accuracy those whose cancers will or won't pose a risk to life then it is all just meta-analysis gibberish - in my opinion.
Just realised its the Daily Mail which has the infomation wrong with its misleading headline. No surprises there.
Ive said the same thing before - at the end of the day the choice ultimately should be made by the person involved, and I believe that if my results had shown signs of BC I would have definitely opted for the treatment on offer and not left it to "chance".
I only posted the article to share the information - and Im sorry if I have upset anyone in doing so, it certainly wasnt my intention.
I heard this on the radio and have just read it on the BBC news website.
Having had the trauma of lumps for many years, it was almost a relief to have a diagnosis and mastectomy.
If I were told tomorrow that my mastectomy may not have been necessary, I would still have been relieved to have had it.
Figures mean nothing to the individual women concerned.
This research does NOT show that a third of women with breast cancer don't need treatment.
The figure refers to those whose cancer is found by mammogram screening (not the majority of breast cancer cases.)
I dont come on the site very often since I got my test results, which for me was very good news.
But since sharing that time with all you ladies on here I have tried to keep up to date on any new articles etc that I come across ..... Im determined to keep my awareness!
An article in todays paper (it was also on the radio this morning) .... its quite a scarey thought really ...
Take care and I hope you all have a good weekend,