screening labelled bad for women

screening labelled bad for women

screening labelled bad for women tinyurl.com/y8nvr6 Read one man’s opinion that screening is bad for women- I’m apoplectic. What do you think- economy /male logic/ignorance? dilly

jury out on screening the BBC ran a story today about a new world wide survey of screening that suggests the benefits may not be worth the risks of overtreatment. Prof Baum was trotted out speaking against it, he has thought it was a bad idea for years.

Most breast cancer is picked up by women finding it themselves and personally I am not convinced that the more aggressive tumours get picked up quickly on mammograms - are they likely to wait 3 years to be detected without already reaching sizeable proportions? I think not. there’s a huge amount of capital tied up in the breast screening programme and all the literature seems to be written in support of it by people with a vested interest in continuing it i.e. people working in breast screening.

They always trot out the stuff about how early detection means you won’t have a mastectomy too, in my case however early they screened my left breast I’d still have a mastectomy as I’ve already had a lumpectomy. Plus sometimes the results of lumpectomy are worse than mastectomy and reconstruction (at least I think so) in cosmetic effect. Plus if you have lumpectomy and it recurs you are expected to have yet another op.

Mole

I just thank God for screening as I had a non palpable 2 cm invasive ductal cancer that had already spread to the lymph nodes when picked up on a normal 3 yrly mammo. I didn’t know enough then to even ask whether I should be having chemo and rads, just went along with what I naively thought was best practice. Perhaps a little knowledge is a dangerous thing as I would most likely question it today, having had the benefit of 3 yrs research and help from ladies on this site. However, I don’t regret a single moment of my treatment and didn’t when going through horrendous chemo and living on Frutijuice for 4 months. It is easy for these research doctors to pontificate on dubious research figures, but they are not the ones confronted with a life threatening disease, as we all are/were. I can’t figure out how they know which tumours would not be life threatening, and which ones are.Cancer can recur after many years, so I wonder how many years they are basing their stats on. Certainly my surgeon, Onc and even my gastro, said I should have the full treatment if I wanted to live.

Mole - it is great to see you posting again. I have sorely missed your intelligent, if ironic at times, take on life.
Love, Liz.

bbc.co.uk/radio4/womanshour/01/2006_42_wed.shtml

  • listen to Women’s Hour talk on benefits or otherwise of breast screening.

My view is that mammograms should be aimed at high risk groups which in my view consist of

women/men over 45
women who have no children or have had children after 30
tall women pre menopause who had growth spurts before aged 15 which resulted in them being tall pre this age
fat women post menopause
people with dense breast tissue
people who have had polycystic ovarian disease or severe acne in the past
people who have close relatives with breast cancer
Women with previous breast problems e.g. fibrocystic disease or very lumpy breasts

Then the rest of women wouldn’t be subjected to the pain and also it would cost less

Also MRI/ultrasound should be used more frequently for anyone with a breast lump aged under 50

Overdiagnosis? This was run as a front page article in The Daily Telegraph today. It states that DCIS is routinely given treatment that a ‘latent’ cancer does not require when not all DCIS will become invasive, and won’t necessarily threaten a woman’s health in her lifetime.
I had widespread DCIS and have had a mastectomy, reconstruction and will be having rads and tamoxifen. I am 40, there were no symptoms and this was detected by a mammogram that was part of a private well woman health check.
This research has really shaken me. I’m normally pretty cynical, but decided that the only way to get through the op and be a survivor was to put my faith in the doctors treatment.
My thoughts about this report are well, I’m 40 and had 12 areas of DCIS in my breast- left untreated any one could have become invasive over the coming years. No medic in the world could offer me a guarantee that it wouldn’t . Would many woman take that chance and opt to decline treatment?
But nonetheless this has introduced little doubts into my mind which are really undermining me and the faith I need to have in my treatment. I need to feel and stay strong. It’s 3 weeks since my op and I’m mostly ok but need the strength to get through the crappy bits- my reconstruction hasn’t been straightforward, I miss the body I had, I want to recover NOW etc, etc.
I’m going to ask for a written report of my biopsy results, it might help, I don’t know.
Any thoughts?
Barbara x

the personal and the bigger picture Hi Barbara:

I think its really hard when we read research which makes us question whether we got the best treatment. I think all we can do is tell ourselves that we did the right thing given the state of knowledge at the time.

Thinking on cancer treatments changes so rapidly…and its hard not to think…'if only I’d talked to that consultant…or if only the report had come out then…

Our reading of the hundreds of reports on breast cancer is inevitably colured by our own experiences. So on screening, women whose cancers were discovered at screening often staunchly support it…others like myself who were badly let down by screening )5 mammograms age 47-53. One recall…still misdiagnosed) more sceptical. Its hard to step back and look at the evidence dispassionately.

There has been controversy for some time about the pros and cons of screening and Micahel Baum’s views are well known among cancer experts and worthy of attention. I think screening does save some lives, though probably not as many as we like to think and not as many as the breast cancer charities sometimes seem to be saying…but screening is not unproblematic…there are problems with flase positives and unecessary surgery. Also early diagnosis doesn’t necessarily make any difference to overall survival statistics though ti improves the disease free survival statistics.

I agree with much that Mole says. I also tentatively agree with Breakthrough’s campaign to encourage more of the 50-70s to take up their breast screening appointments and more over 70s to ask for screening. I think this is more important than extending blanket screening to under 50s who often have dense breast tissue.

These reserach findings are signfiicant though their implications for us as individual women with breast can be painful.

Mole thanks for the link to the Womans Hour prog. though its made me realise the flash programme isn’t working on my computer…ugh…

Jane

Scanning Neither ignorance nor “male logic” but outrageous use of statistics. I think the NHS is under pressure from the Government to economise.

Not outrageous I don’t think this is outrageous. I think its a difficult and sensitive area. We want to believe that screening is a good thing and yes it does save some lives but that doesn’t mean there aren’t also problems with screening. See article from the Guardian:

guardian.co.uk/medicine/story/0,1925324,00.html

Jane

My daughter found her lump 2 months after GP check and 4 yrs before she quaified for screening. Had screening been available for over 40s [as in Australia] with close br ca relatives she would have got treatment BEFORE lymph node involvement. As stats worsen all women have reason to fear br ca putting ladies off screening terrifies me. Stats often reflect statisticians mental set but don’t doubt the br ca rise dilly

Still outrageous You only have to look at people’s posts re mammograms to know there are problems - that’s not really the point. This report is manipulation in order to achieve a bureaucratic aim. Do you not recall how much good statistical evidence was put forward to back the increased mammogram programme? And how hard it had to be fought for?

More information The recent reports are about reserach conducted at the Nordic Cochrane Centre in Denmark which studied the benefits and negative effects of 7 breast screening programmes in the USA, Canada Scotland and Sweden. 500,000 women were studied.
It found that for every 2000 women invited to have mammograms over a10 year period 1 would have their life prolonged and 10 would endure potentailly unecessary tretament. Overall screening reduced mortlaity by about 15%. The NHS screening programme has questioned these findings…Dept of Helath Advisory Commitee says that 5 lives will be scared for every 2000 women joining programme over 10 years.

Director of NHS screening programmes says breast screening saves 1400 lives a year. (But I’m not sure what this means??)

So figures are confusing and contradictory. I do think that this research raised important issues…I think we must be honest about the drawbacks as wel as the benifits of screening.

One of the researchers in the Danish study says: ‘Some people get offended if you start questioning the balance between benefits and harms. They just don’t want it discussed.’

I think we should want this discussed. I think I broadly support the breast screening programme but its not a cure all for breast cancer and we must be open to its problems.

Jane

The ductal carcinome in situ cases quoted as being scared out of their wits and not needing ops is pure speculation. How can anyone know how a DCIS will develop? My br ca and daughter’s were both ductal. With mine the lump was unfeelable but br swelled and nipple disappeared-I had 5cm and 2cm tumours -poor prognosis on Nottingham scale- true for me. Daughter’s was undetectable by her excellent GP 2 months before it became a lump DCIS is the most common of all br ca,and br ca is the most unpredictable of cas. If you’ve got DCIS you need to know- ignorance may be bliss but possibly a short lived Fool’s Paradise. The study does not list the number of DCIS cases who died of other causes before br ca mets killed them. Also the UK part of the study [which might not be exclusive to NHS] does not take into account the awful cockups in br ca reporting which must have skewed our stats.dilly

I don’t fall into any of the high risk categories and had no symptoms when i was diagnosed aged 50 after my first routine mammogram. I had 2 multifocal grade 3 tumours and 6/14 positive nodes with extranodal extension and lymphovascular invasion. If i hadn’t had that mammogram who knows how much further it would have progressed before symptoms appeared.
If i’d been six weeks older i’d have been screened a year earlier and i may well now have a far better prognosis.
Kelley

When I was diagnosed with DCIS October 2004, I actually read a report in ‘What Doctors Don’t Tell You’ which said basically the same thing, that most treatment for DCIS is unnecessary. It scared me so much, I didn’t show it to my husband, I fretted for a few weeks, then came to the conclusion that now I knew I had it, I couldn’t just ignore it and leave it there to see if it progressed or not. So I went ahead and ended up having a mastectomy.
It may have been unnecessary, but I am more comfortable wth my decision than if I had not gone ahead, I know I would be worrying all the time.

And I remember at the time asking how they knew that DCIS goes on to become invasive cancer, without leaving it in people to monitor, but I never got any real answers.

It’s a very contentious issue, the worst being that if they are going to screen and diagnose, they then have to have the money available to give all those people the best possible treatment. This is where they seem to fall down.

Anyway that’s my 2-pennorth.

Screening Hi everyone,

Some thoughts on breast screening.

Breast screening is a bit like advertising. It is said that only 50% of advertising works but the problem is that we don’t know which 50%.

It has been suggested that screening saves the lives of a small number of women whilst causing a larger number of women to have unnecessary treatment. The problem is that we don’t know which individuals will be saved and which individuals will undergo treatment needlessly.

I imagine that most of us here if given the choice between ‘treatment with a 90% chance of it being unnecessary’ or ‘no treatment but a 10% chance of dying’ would go for the former because we know we would be better losing a breast, having treatment, being worried, etc, than taking such a high chance of losing our lives.

The issue here is not whether to give women screening or not. Without doubt it saves a small but significant number of lives.
The issue is that money needs to be invested in research on how to tell which screened women would benefit from the breast cancer treatment and which ones wouldn’t.

So why might Michael Baum and others wish to scrap screening? It isn’t as though it is expensive - it’s hardly worthy of being called small change as far as the NHS budget is concerned. Why does he put such a very high value on the worry caused by breast cancer treatment but such a very low value on saving women’s lives?

I believe that this approach shows a deepseated lack of respect for women; it is the 21st century equivalent of how women were viewed in Victorian times - as passive, in need of protection from ‘real’ life, hysterical, ruled by their emotions and incapable of rational thought. Even though scrapping screening would increase women’s risks of dying Professor Baum would prefer this to making women worried. Please note that he wishes to refer the decision on screening to NICE - an enclave of white, male, middle-class medics if ever there was one. He has not at any stage consulted women who are have had or are having treatment, nor expressed any wish to consult them in the future.

Don’t be fooled: any termination of the national breast screening programme would be based on misogyny and not medicine.

With best wishes,

Sue

NICE Out of idle curiosity and prompted by Sue’s comment about the NICE structure, I did a quick Google search. Here’s the link nice.org.uk/page.aspx?o=may2004content.aboutnice.whoweare.staff.

They may all be white and middle class - ( who can be certain from a name? ) - but it certainly doesn’t appear to be a male ‘enclave’.

Cheers
Jim

Hi Jim Hi Jim,

I stand corrected.

I suppose that I meant the people who are on the steering group who will make the decisions rather than the whole staff of NICE.

However, even so I ought to check my facts first.

The Breast Cancer Guidelines are being updated at the moment and so far only the limits of the remit of the guidelines are being discussed rather than the actual guidelines themselves.

It would be interesting to find out how many of the steering group (when it forms) will turn out to be white, middle-class and male. I’m hopeful that it will consist of at least 50% women and not only women from patient groups, and not only of people with western European backgrounds.

Just for information the steering group for the Scottish guidelines were two thirds male with no non-western European names.

The Royal College of Surgeons Cancer Services Committee consists of 27 individuals, 23 of whom are definitely men. One of the men has a non-European name. The two women on the group are patient liaison representatives.

It’s all a bit depressing for a feminist.

Best wishes,

Sue

more on screening… I’m a feminist too and I feel very annoyed about accusing Michael Baum of showing a ‘deepseated lack of respect for women’. I don’t know him and probably you don’t either Sue but I have heard him speak and was impressed. I understand he actually did rather a lot for women with breast cancer during his 40 years work in the NHS. For example I think he introduced the first breast cancer counselling service and the first clinical nurse specialist and was responsible for teams which led some important clincial trials. He seems to be a bit of a maverick but I think we need people like him thinking outside the box.

Breast screening is an emotive issue for us all, but this debate is an important one. The benefits of screening by mammogram are not undisputed.

I have just come back from the Breathrough Westminster fly in and and feel as ambivalent as before I went. I was interested to discover that the Cocrane report which reviewed a number of screening programmes actually used quite old data from screening in the 1960s, 70s and 80s and it would be good to see more contemporary statistics. No one seems quite able to answer the question of what the 1400 lives claimed to be saved annually by the NHS screening programme actually means. 5 year survival? 10 year survival? What?

I agree with Sue that we need more research on which early pre cancerous and cancerous conditions may be aggressive and which not.

I do think women should be informed more clearly that ‘early’ diagnosis doesn’t necessarily mean longer overall survival. Yes it does in some cases but in others not. Some breast cancers even if discovered early may still kill.

I noticed a snippet in the Guardian yesterday that NICE is recommending that women aged 20-49 with a history of breast cancer should be given MRI scans as regularly as once a year. I think this is an excellent recommendation and real progress.

Its easy to take a potshot at consultants and at NICE because they’re men/white/middle class but in this instance I don’t think it particularly helps our lobbying as diverse women with breast cancer.

Jane

Like Jane, I have come back from the Westminster Fly-In feeling quite ambivalent about screening. Although I agree with screening in principle, I dislike the way that valid questions about the shortcomings of mammograms are just skated over by the NHS and some cancer charities.

I have some sympathy with Prof. Baum’s views, but until scientists can predict which cancers and DCIS can be left and which need urgent intervention, there will inevitably be cases of over-treatment.

Nevertheless, I applaud him for raising questions about the effectiveness of the National Screening Programme. I was diagnosed with DCIS and two Grade 1 cancers, so I suppose in his opinion, perhaps I could have been left untreated. Well I don’t want to die of breast cancer and, based on the information available, I have no regrets about the treatment I’ve had, even if it may have been over-treatment.

I think women should be given more honest information about the benefits and shortcomings of the screening programme and then they can decide whether they want to participate in it or not. And statistics like the “1400 lives saved” help nobody when they are so open to interpretation.