Has anyone approached or worked with their local health authority regarding breast screening, with a view to improving levels of uptake?
If you have and would like to share any relevant ideas, please can you let me know.
Thank you.
Screening, in my view, should be preceded by counselling, so people fully grasp that it is cancer that is being looked for, which is fatal if untreated, and that one in however many women who attend screening will be diagnosed with cancer, a cancer they currently don’t know they have, and that it will mean treatment, most likely surgery, which can be disfiguring, and quite likely other treatments, which also have some permanent unpleasant effects. I believe this would help to offset some of the post traumatic shock that undoubtedly goes with being diagnosed on screening for some women. Essentially, you should only have a test if you are prepared for the results of the test, and would act on those results; so that needs to be spelled out in very big letters upfront, in my view. Otherwise, I am worried about the morality of carrying out screening and would not want to increase uptake without such safeguards.
s
By the way - there is a really good discussion on screening on the second page of the San Antonio Breast Cancer Symposium Blog thread under Current Issues and hot topics. Why were you asking anyway, Boobytrap?
s
Personally I would rather there was more screening for younger women - and there were not so many of us in our 40s with secondary cancer on these forums- so I am not sure why there would be concerns about the morality of screening - i would really have preferred being given an oppurtunity to save my life and I only regret I didn’t organise it myself at 35 How can it be immoral ?
alot of women simply dont understand that they are more vulnerable with age - my own mother in law has turned down a few invitations to screenings as she thinks she it too old for breast cancer. I have explained it to her - but she does not want to hear it.
cathy.
Hi Cathy,
After reading what you say about your mother in law, I have had a look at one of BCC’s publications regarding breast cancer risk and age, perhaps your mother in law would like to read it? You can either download a copy (larger print if needed) or order a free copy to be posted out to you. Hope this is useful.
breastcancercare.org.uk/docs/bcc_risk_final_0.pdf
Kind regards,
Jo, Facilitator
I do hear what everyone is saying but would like to add a couple of things. I had been very thoroughly screened every six months for around six years before I was found to have 5cm tumour with 12 pos. nodes. How come the cancer was missed? God knows. Younger women’s breasts are more dense. There were other ‘younger women’ things going on in there too. It should be admitted that screening and diagnostics in general are not as easy or accurate as the general public would like to think they are. On occasion I have been made to feel I was in some way at fault for the seriousness of my disease, that because it wasn’t ‘caught early’ I hadn’t been vigilant. The public would like to feel that screening will save them when patently it will not.
Secondly, is the cancer system able to cope with the possible increase of patients if every single eligable candidate turned up for screening? I suspect not.
I’ve written on other threads about how screening personally let me down…and I also think that more information about the costs and benefits of screening ought to be readily available to those who take up screening.
But there are other issues too about the disparity in taking up screening among different groups of women. Working class women and women form black and minority ethnic groups are much less likely to take up invitations for screening tan are white middle class women. Working class and BME women also have poorer breast cancer survival rates. These are important issues…partly connected with screening and partly not.
Jane
Many of the questions regularly asked about mammography screening are discussed in NHSBSP61 - Screening for Breast Cancer in England Past and Future. Just enter NHSBSP61 in Google and you’ll find it.
It covers costs, benefits v risks, overdiagnosis and treatment, interval cancers, DCIS and the Sloane Study, risk of radiation induced breast cancer, why it’s not routinely performed for younger women (one reason given being increased susceptibility to harmful effect of radiation), the controversy between the IARC (International Agency for Research on Cancer) and the Nordic Cochrane Centre about mortality reduction.
It’s not an easy read if you aren’t very interested in science and statistics and like everything cut and dried. In my view it illustrates that mammography screening falls short of what we need from breast screening - which is accurate detection (which we’ve got - with some exceptions) and, just as importantly, much improved methods to predict which abnormalities can be safely left and which require intervention.
The sort of information contained in this document should be readily available to those who want it without them having to trawl through the internet to find it. Thank goodness for the internet. Without it we’d never get access to any of this.
My point was that it is important to properly brief people before any kind of screening test in order to ensure they grasp - and ‘grasp’ is the word here, not just ‘have read the leaflets’ - what they are letting themselves in for: a possible diagnosis, and the treatment that goes with that. I didn’t say, or mean, that screening of itself was not moral. The moral concern is about preparing people mentally for what will happen to some of them. With cervical screening, for example, nobody has ever at any time over all the years I’ve been going, ever, once, looked me in the eye and said, “Do you understand that this could lead to hysterectomy? And do you understand what that might mean for you?” Many women will say that it is better than dying. I am not raising that debate here. My point is that perhaps they should be asked something along the lines of those two questions, and if they can say yes to both then they are in a better position to go forward. The point I wanted to make is that people should understand that the results of the screening test could change their lives in order to forestall as far as possible the post-traumatic shock that occurs in higher numbers among those diagnosed as a result of screening, as opposed to those who consult a doctor on discovering symptoms. That is a recognised phenomenon, so I do believe it is a moral responsibility to address it.
I wonder if there perhaps ought to be something of a more detailed and general education programme for any of those conditions for which screening tests are now offered, because it is one thing to decline screening because you have made a decision that for you personally it is not the right thing, and quite another to decline it because you have misconceptions about the illness or the treatments. My point was not that there should be less or more or different screening; only that there is a discrepancy between what many people understand about diseases and treatments, naturally enough, because we only know about what we’ve experienced, and what the professionals who offer the services know, and that gap needs at least to be narrowed. I would be worried about increasing uptake without improving the preparation of people for what it is going to mean for some of them.
By the way Daphne - hear hear about the internet. (ref. a thread on here some time ago which some ladies will remember in which there was a discussion about the use of the internet for information).
I agree we should be given much more information about what happens if you are diagnosed. Current leaflets are written by people working for the screening service and/or sponsored by the service, and they only stress the positive benefits as they see them e.g. you will find any cancers at any early stage before you need a mastectomy.
This is untrue as whether you have a mastectomy or not depends on many factors other than screening. Despite mis diagnosis for 6 months and nothing whatsoever showing on a mammogram I still ended up with a partial mastectomy but the size of what was removed had nothing to do with early or late removal, only to do with having low grade DCIS in one area.
Whether I’d been diagnosed earlier would have made no difference to the surgery I had which was the standard for focal DCIS at my hospital. Other hospitals differ, but this can result in women having several operations to remove margins, another thing they don’t tell you in the screening literature (DCIS is associated with high levels of re-excision).
The only real benefit of screening is if it picks up cancers at a point when they haven’t already spread and can be cut out by surgery, or lesser kinds of surgery. This is assuming that our current beliefs about the spread of cancer are correct i.e. that in the early stages it hasn’t got the capacity to spread beyond the breast. Some more recent research seems to indicate that cells go elsewhere but in some women don’t develop further whilst they do in others.
I’ve also met several women who went to all routine screens and found their cancers in between these (so called ‘interval’ cancers) so it didn’t work for them and may have made them more relaxed about getting cancer.
So I would like to see more research into the progression of breast cancer and continued research into the costs and benefits of screening.
I think all people should receive some education about the nature of cancer, (not just breast cancer) as the figures are constantly telling us that one in three of us will be affected by cancer. Education including basic biology of cancer, rudimentary explanations of treatments side effects and possible outcomes. I think it should be taught in schools, to teenagers, to young mothers, and so on, as part of general health education. If we are all taught at an earlier age, how different sorts of cancers act, what sort of symptoms we should be aware of, what the process of diagnosis involves - doctors app, hospital app, triple assessment etc. We are always being told how survival rates are improving so if we grew up with more awareness of what cancer is, maybe more women would take up screening options. Cancer is scary enough and I think part of the reason for this is ignorance.
I’m currently very grateful for the screening process picking up my bc when I hadn’t been able to feel anything. But I agree with snowwhite that there is a need for proper briefing when going for screening.
I turned up for my first routine screening appointment because I felt it would be silly not to get into the system just in case at any point … What I didn’t expect was that I would be recalled and then go on to receive a diagnosis of breast cancer with breath-taking rapidity. The initial information leaflet and the information in the recall letter all stressed that even if you are recalled for the next stage it is unlikely to be breast cancer - but it was.
I had a lot of support from family, friends and colleagues from the moment I was recalled, but the shock was (and, at just less than 3 months from that screening appointment, still is) still monumental. I’m not sure I would go so far as to call for pre-screening counselling, but I do agree with Molennium that more information about what happens if you are diagnosed should be provided.
Jane’s points on the take up of screening are important and I think that the support needs of what are often described as “hard to reach” groups should be considered when thinking about information about a possible diagnosis (although I’ve no ideas on how to do this).
Eliza
Let’s have a closer look at the statistics in NHSBSP61, published by NHS Cancer Screening Programmes and on its website.
It says the following:
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The 2002/3 mastectomy rates for screening detected breast cancers was 27% for invasive cancer and 29% for DCIS (Ductal Carcinoma in Situ), a non-invasive breast cancer.
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The Screening Programme has resulted in a large increase in the numbers of women diagnosed with DCIS.
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In the UK, 69% of DCIS diagnosed is high grade which is assumed to be more likely to progress to invasive breast cancer than low grade. Currently all women diagnosed with DCIS are offered treatment, regardless of grade – mastectomy or lumpectomy and radiotherapy and possibly Tamoxifen.
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The document discusses the question of overtreatment and diagnosis for DCIS, recognises it has a particular responsibility to encourage research into DCIS and notes that it would be “valuable” to be able to identify which cases of DCIS would not progress to invasive disease, but that’s not possible at the moment.
To put this into perspective, assuming a regional screening centre screens approximately 30,000 women per year (I’ve based this on a figure I’ve seen for 2005/6 for one UK centre), the rate of DCIS diagnoses per 1000 women screened is 1.44 (based on NHSBSP1 data for 2002/3). This means that approximately 47 women out of 30,000 screened would be diagnosed with DCIS. If 69% of them have high grade DCIS, 32 of them are high grade and 15 intermediate or low grade. They are all offered the same treatment which is based on current assumptions about the risk of DCIS progression.
Since increased rates of diagnosis of DCIS are a direct consequence of the Breast Screening Programme, you would expect it to be covered in the leaflet Breast Screening, The Facts, that’s issued to all women in England with their breast screening appointments (unless individual centres have their own leaflet) – especially as it’s designed to help women make a genuinely informed choice about breast screening. But DCIS is not mentioned at all. There is possibly a vague reference to it in a paragraph that says that if changes are found early, there’s a good chance of a successful recovery, but it says nothing about usual treatment for early changes.
I’ve lost count of the number of times I’ve seen statements made in the media that 5 year survival rates for breast cancer are now over 80%, whereas 30 years ago they were much lower (I think I’ve seen about 52% quoted). You don’t have to be a maths genius to realise that obviously breast cancer survival now is much better than it was 30 years ago because there wasn’t screening then and all women with screening detected cancers are being included in the survival statistics. (DCIS is excluded from the figures incidentally) As screening is very good at picking up early stage cancers, it would be astonishing if a significant majority of women weren’t surviving at least 5 years.
I think it would be more enlightening to compare recurrence, survival and mortality rates now and 30 years ago for women whose cancer is detected from symptoms, not screening. Then we could see the real effect of increased breast awareness campaigns and better treatments.
I think every woman has a right to have complete, unbiased information to help her to decide whether to participate in the Breast Screening Programme and to understand the possible consequences of a diagnosis of DCIS as well as invasive cancer, but I do not believe women are being given all the information they need. Admittedly, the NHS Cancer Screening website has an article about DCIS that is much more informative, but you won’t find it unless you go looking for it. Another factor to consider is that occasionally it is possible for invasive cancer to be present, but not visible with mammogram or ultrasound and it is only discovered following surgery for DCIS.
I don’t know whether access to all the facts would deter many women from breast screening or not. Breast screening units have targets for percentages of eligible women they screen and I believe funding is linked to achievement of the targets. Perhaps that partly explains why women don’t seem to get all the information they should.
Without this information, women don’t realise that a lot more research is required to really understand DCIS and that the treatments offered are based on the current assumptions about disease progression rather than evidence from clinical trials.