Too much information? The case against talking about Ductal Carcinoma In Situ.

Our mammographer colleague Geraldine has a few things to say about the National Breast Screening Information leaflet. Is the leaflet for or against breast screening? Is it helping you decide, or, as Geraldine fears – putting you off by talking about ductal carcinoma in situ?

Am I being controversial?

Making a choice - the possible benefits of breast screening

Making a choice – the possible benefits of breast screening

This might be a slightly controversial blog but I’ve been spurred into writing it by a conversation I had with one of our new assistant practitioners. She told me that her sister had received an appointment for breast screening but had decided not to attend because she had read the accompanying leaflet and decided that she didn’t want to undergo unnecessary surgery for breast cancer.

While I know this is not the message the leaflet is intending to put across, I fear the reality is that many women read it and see the phrase that

“for every 1 woman who has her life saved by breast cancer about 3 are diagnosed with a cancer that would never have become life-threatening”.

I have highlighted the comment because that’s how it appears in the leaflet whereas elsewhere in the leaflet is a small unhighlighted comment which says that

“doctors can’t tell whether non-invasive breast cancers will grow into the surrounding breast or not”.

Ductal carcinoma in situ, or DCIS

The non-invasive breast cancer referred to is a condition called DCIS or ductal carcinoma in situ. It is true that at present no-one knows which of these types of cancer will go on to become an invasive form and therefore the safest option in considered to be to remove these carcinomas although many of them would probably remain within the duct and not become invasive. The problem is that if you don’t remove them, what do you do?

Image showing colourful question marks

It’s a question!

The LORIS trial

Trials are going on at the moment including the LORIS trial which for women with low grade DCIS involves having a mammogram each year for ten years as opposed to having surgery.

I know that in our trust it is proving quite difficult to recruit women to take part in the trial. Hearing that you have been diagnosed with cancer is so emotive that many women will just want to have it removed rather than live with the uncertainty over a number of years and this is perfectly understandable.

However women should be given enough information about their particular diagnosis so that they can make an informed decision about treatment whatever that might be.

Positive or Negative?

My problem with the leaflet is that it seems to concentrate too heavily on the negative aspects of diagnosis and I feel that this is deterring women from attending for breast screening. Most women who come for a mammogram will get the “all-clear” and I feel the leaflet concentrates very heavily on the negative aspects of a breast cancer diagnosis.

I am happy to be proved wrong – what do other people think?

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11 thoughts on “Too much information? The case against talking about Ductal Carcinoma In Situ.

  • Wouldn’t it be useful to have a method of screening that didn’t use ionising radiation and was more effective than mammography in dense tissue to be able to frequently scan this type of cancer to monitor rather than the current situation? Micrima are working on this with a technique using radio waves.

  • I do agree with Elizabeth, that it would be useful to have a additional method to help ladies with Dense Breast Tissue and mammogram failure, I understand that they have Ultrasound scans on hand at the Breast Screening Clinic and in certain cases surely an additional test with the Ultrasound would be helpful to both patient and radiographer to get a true result, rather than just “No cancer SEEN”
    Since my diagnoses of Invasive Breast Cancer with a tumour measuring 7cm x 7.7cm and finding out (myself) that all my 4 mammograms had shown dense tissue and reported as “remained unchanged for many years” I am now on the thoughts that maybe (Now) I would NOT have gone to the screening clinic every 3 years, I would then be able to tell my GP that I was concerned about the “thickening” I could feel and then I perhaps I would of been listened too, as in my case I was told that if my mammograms were “clear” then it was nothing to worry about as this is “Normal” for you. I had complete faith in the screening program and felt that I was doing everything possible to be “Breast Aware” some Dr’s say that Ductal Carcinoma in situ is not a cancer until it becomes invasive and perhaps in this case it should be monitored regularly. Still these leaflets do not give attention that 40% of ladies (over the menopause) may have high % of Dense Breast Tissue and may need additional screening or just told instead of keeping this a “Secret” time for change I think, I will check out the Micrima and the LORIS trial as I am not familiar with these, I am an Ambassador for Breast Density Matters UK and with the help of Cheryl Cruwys we are trying to help ladies get educated on Breast Density.

  • Hi ladies and thanks for commenting. I don’t know anything about the radio waves technique I’m afraid but if it’s successful I would think it will be a number of years before it will be widely used. At the moment, mammography remains the best test we have for screening purposes. It isn’t perfect – no test is ever 100% accurate – but it’s the best we have. Ultrasound is a useful addition to mammography in many cases but it is most useful(correct me if I’m wrong any ultrasonographers who may be reading!) if there is a specific area to be examined within the breast, for example a lump. The mobile screening units don’t have ultrasound access and it tends to be used when ladies are called back for assessment as there is then a specific area to be examined. Hope this helps!

  • Thanks for bringing Micrima to my attention, Elizabeth, I’m going to look into it. Dense breast tissue certainly causes difficulty when reading the mammograms, Pat, as you know, and is the subject of a lot of discussion within the UK at the minute – I hear that there’s more research on it’s way.
    What have you found out about the mammogram technique ‘tomography’? We’re about to start using it where I work – have you come across this yet?

  • Interesting listening to you all talking…and it is great. My thoughts are that women get mixed up with the purpose of screening and the myths..still around…about being breast aware! Hence Geraldine’s too much information comment! Role on new techniques but they can take a long time to be population screening tools.
    I wonder Pat if there is a case for really encouraging women to ‘shout’ if they feel something that concerns them even though it has been there for awhile..as you say. That is a myth that if the mammogram is clear its ok though it is true for about 96%. If we are aware of something different, even long standing, we could ask for a referral to a Symptomatic ( I think I have a problem ) breast clinics.
    I am all for more interaction whilst you attend for the National ( I’m just here for a check up..no worries about my breast) well woman Breast Screening. Wonder what a practitioner could do at the time to help a woman share information better?

  • Hi Julie, Thanks for taking this conversation forward it’s nice to hear different comments, I mentioned many times to my GP (I think I have a problem) I had an area in my left breast that I was concerned about, GP referred to his notes on my routine mammograms and said “there fine” nothing to worry about. When I went along to the Breast Screening Clinic in 2009 I mentioned to them that my breasts felt lumpy and was told that it was “hormonal” and “normal for me” and not to worry about unless I got a recall (which I never did) so I relied fully on my mammogram result, which came back clear! Then in 2012 I was called again to the clinic, I remember the clinic had brand new “Digital” machines and I filled in a questioare asking about family history of Breast Cancer in family (to which my reply was many) then asking if I had “Lumpy” breasts ( to which I answered yes) also most importantly (I thought) were they lumpy today ( I answered yes) I have a tiny mole over my left breast, I was told that it needed to be commented on as I was told ” this machine finds the tiniest abnormalities, and I wouldn’t want you be called back for nothing” I had full confidence that if there was a problem it would be found and addressed, needless to say my report came back “Clear no cancer” recall in 2015. I think that GP’s should have this information at hand as my GP was unaware that Breast Density was a limitation on mammograms until I myself educated him on this issue!
    Hi Beverly, I have read a little on the Tomography and although it seems the next stage, I have read reports that it gives more radiation as it takes multiple x rays but please don’t quote me, I have not digested all the information (sorry) however I personally am more excited in the Micrima as this is cheaper and gets better reports.

  • Hi all. We have been using breast tomosynthesis in our department for several years now and pretty well all ladies who are recalled for assessment have it done. According to medical physics the dose is about the same as a conventional mammogram as although it takes more x-rays, each one is a fraction of the dose. It seems to provide some of the answers to dealing with dense breast tissue – as I said before no test is ever 100% perfect, but it’s pretty good!

  • Hi Pat, I’ve had a quick look at Micrima – my word, the things they’re coming up with now! Mammograms provide what I would call ‘structural’ information; an image of what the breast internal structure looks like, and as you have found out, sometimes the structural information doesn’t give you the full picture of what is happening with the ‘functional’ or internal cellular activity. This is what makes some mammograms fail to diagnose cancer, especially in dense breasts where the internal structure is so, well, dense! Techniques like Micrima show what is happening at a cellular level, so any rogue breast tissue like tumours show up, but I would say that it might not show the structure of the breast in any great detail, as it stands. Accurate sizing of tumours does have a bearing on what treatment is recommended, so the doctors do need good structural information too. Micrima might improve in that respect, and it looks like they’re working behind the scenes on this technique still – we need to keep an eye on it!
    That being said, dense breast tissue is said to increase your risk of getting breast cancer, and in America I believe that every woman is informed about their personal breast tissue density at screening – are you campaigning for this to happen in the UK with your group?

  • Hi Beverly,
    Thank you for your comments and I take on board all what your saying, I agree that maybe the Micrima will help us in some way along the way forward, but as I’m not a professional, just a patient who’s tumour was missed on over 4 mammograms then I hope that any further tests would be welcome for other ladies with “Density” I would hope that women were at least “told” that they are at high risk, from the density itself also the mammogram failure, as it’s a “Double whammy” for us women.
    Yes Beverly, I am trying to help women coming to the Breast Screening Programme with “knowledge” that was denied to me for so many years, I trusted my mammogram results. I know they are “now saying” that mammograms are not 100% accurate , I fully understand this, but after attending 4 times in 10 years and being diagnosed with a 7cm tumour just 6 months after “all Clear” I hope I can help just 1 lady then I’m pleased, that they have found out this information.
    I am a proud Ambassador for Breast Density Matters UK and alongside Cheryl Cruwys we are campaigning (please sign the petition) for women to be “told” and maybe offered further tests eg. Ultrasound or now the Micrima maybe.

  • Hi Pat
    Yes, I think that when I have attended breast screening conferences within the last few years, that’s exactly what researchers were saying – that we need to look more at what they called ‘personalised screening’; which is assessing your risk of getting breast cancer and then offering alternatives to the bog-standard three yearly mammogram. I found it complicated though, I think that the information would need to be presented in such a way as to be understandable by everyone – glad that’s not my job!

    I think this makes sense, especially for those with dense breasts – if you were offered a mammogram and something else that would help avoid the situation that you found yourself in, wouldn’t it? The question is, what is the ‘something else’? I saw Micrima on the BBC breakfast news, did you see it? The researchers are calling for more women to come forward and help them develop it – I think it’s a shame if research like this doesn’t get anywhere because of lack of people, I hope they succeed in getting more people to help.

    Have you heard of any other new techniques that I can look into?

  • Interesting! Thankyou. Do any of you think it would be useful to have real life scenarios in the leaflet on the diagnosis of DCIS? Maybe highlighting the point that DCIS may develop and emphasising the LORIS trial? Could clients have the option of the ten year yearly screen if diagnosed with low grade DCIS?

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