BreastScreen NSW and Qld may be advising of your Breast Density in 2025 - cancer or not!

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arpie
arpie Member Posts: 7,742
edited January 9 in General discussion
This article was in the Sun Herald yesterday ..... yet another woman who was given the all clear from BreastScreen NSW (same as me) only to have Breast Cancer diagnosed just months later.

USA & UK are now advising their clients of their breast density & explaining the reason why a mammogram alone is not sufficient for women with dense breast tissue.

BreastScreen WA and SA are also advising their clients too ..... WHY NOT ALL THE OTHERS?

So it will be another year before this study is concluded, then they will no doubt argue long & hard on the 'yay' or 'nay' factors ......  whilst other women are being NOT diagnosed correctly, when they should have been.

This is the article, below - you may need to expand it to read a couple of columns at a time, to make it easier to read ...

Make sure you daughters/sisters etc are all aware that those living in NSW, Qld, Vic, Tas and NT - are NOT receiving the same 'duty of care' that BreastScreen WA and BreastScreen SA are giving THEIR clients. :( 

Mods - @Mez_BCNA - can Dense Breast Tissue please be added to the 'Popular Tag List' .... the only one I can see there is 'breast density' ... if you search by 'dense' or 'dense breast tissue' - nothing comes up


 

Comments

  • Julez1958
    Julez1958 Member Posts: 1,159
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    Thanks @arpie
    I was advised I had dense breasts early on but no one ever told me that might make it easier to miss sonething  on my mammograms which is exactly what happened to me - I found a lump and turned out to be a 5.5cm lobular cancer only 11 months after I got the all clear on a breast screen mammogram.
    It is outrageous that NSW is not following the lead of the other states advising re this.
    @Mez_BCNA definately a priority for advocacy .
  • arpie
    arpie Member Posts: 7,742
    edited January 8
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    Absolutely, I agree with you @Julez1958 , it is disgraceful that all other states do NOT advise clients of their breast density.  My own Lobular was missed as well, just 4 months before my wonderful GP at the time found it by accident (when she did a pap smear, she said she'd check my boobs as well.)  The next Mammogram & Ultrasound was 'inconclusive' but a biopsy was suggested.  Then the guy on the Ultrasound machine said "this doesn't look like breast cancer' ....... but the Dr doing the Biopsy did it anyway - and there were 2 tumours, both Lobular.

    I agree - BCNA needs to put this on high priority for advocacy - as women are being diagnosed at a later stage, which can be devastating - some being diagnosed with Mets, straight up. 
  • Fufan
    Fufan Member Posts: 123
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    Years ago I was told at a routine mammogram that I had dense breasts.  I had no idea that was of any significance!  We all need to be aware of the limitations of Breastscreen.
  • Cath62
    Cath62 Member Posts: 1,336
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    I had my first mammogram at 40. My GP told me I had dense breast tissue and suggested that I get an ultrasound with my mammograms. I did do this every 2 years until a few cysts were identified and then my gp suggested I have yearly mammogram and ultrasound. It was in these years scans my initial breast cancer was identified. While this was good the issue for me was that no one explained to me what dense breast tissue meant in terms of breast cancer risk. I think education around dense breast tissue and increased risk and how to reduce that risk is important.
  • arpie
    arpie Member Posts: 7,742
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    Gosh, @fufan and @Cath62 and @Julez1958 - how 'lucky' were you that your GPs or Mammogram people actually told you that you had Dense Breast tissue - but how neglectful that they didn't explain the very serious ramifications in that it makes BC detection almost non existent, tho it IS there, hidden in plain sight!   Cath62 in particular - what a wonderful GP to suggest you having ultrasound as well!

    In my 20s I was told I had 'lumpy breasts' ... not sure if this related to the fact that a Dr found benign cysts ... of if it related to dense breast tissue ... 

    It is SO important that every girl is aware of their breast density and the ramifications if they don't know - being later diagnosis than they should have ... and the scarier bit - possible straight up diagnosis for Mets :(   It is Medical negligence, at the least.

    At my most recent MG - the radiographer told me that my boobs are now virtually clear (I am assuming it is the AIs that has changed that density?)
  • Afraser
    Afraser Member Posts: 4,390
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    My breast surgeon advised that breast tissue becomes less dense with age. Mine wasn’t considered dense at diagnosis but is now apparently almost transparent!! 
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 921
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    @arpie I have added the new tag and also included it in this post. I have also shared this discussion with the Policy & Advocacy team.

    Also useful for those who perhaps join the thread and are unsure about breast density, is the information on our website about breast density and screening https://www.bcna.org.au/resource-hub/articles/breast-density-and-screening/
  • arpie
    arpie Member Posts: 7,742
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    Many thanks @Mez.   

    The sooner BreastScreen NSW, Qld, Vic and NT and Tassie start notifying their clients of their breast density - the better!  It will mean earlier detection & possibly less invasive treatment that others have had to endure, due to late diagnosis.


  • Cath62
    Cath62 Member Posts: 1,336
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    @arpie, yes, I had a great gp to suggest I also get mammograms and ultrasounds yearly, and it certainly helped detect my early breast cancer in 2020.

    However for me, despite early detection and aggressive treatment of the disease with surgery, chemo, radium and AIs, I have been unfortunate to have the disease progress to being metastatic 3 years after it was diagnosed. This happened despite being told I would be fine,  live till I am 90 and be just like others who never got bc.  

    I think many forget that despite all the treatment, even if identified early and awareness of breast density, the cancer can still progress to being metastatic. So yes detect early and raise awareness about risk including density etc but we still need more research for treatments. 
     
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 921
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    Relevant to your discussion and from BCNA social posts recently @arpie


    The Royal Australian and New Zealand College of Radiologists (RANZCR) has recently published a position statement on breast density.
    BCNA and the RANZCR believe telling people about breast density should be a routine part of breast screening across Australia to help people manage their risk. Currently it is only reported
    in some states and territories.
    About 40 per cent of women in Australia have increased breast density – this is the amount of fibrous and glandular tissue in a woman’s breasts compared with the amount of fatty tissue
    in the breast.
    Breast density can make it harder to identify breast cancer on a mammogram and is also its own risk factor for breast cancer.
    We will be working alongside partner organisations to advocate for improvements to Australia’s breast screening to make it more personalised based on individual risk, which can include
    breast density.
    If you are worried about breast density, or any other breast cancer risk factors, ensure you speak to your GP.
    See here for the RANZCR position statement and recent media.
    May be an image of 2 people x-ray hospital and text that says SIEMENS  Breast Cancer Australia  Network SIEMENS

  • arpie
    arpie Member Posts: 7,742
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    Many thanks, @Mez_BCNA ... is the Sydney Morning Herald article the same article as in my top post?  You can't read the SMH one online unless you buy a subscription .... or if someone with a subscription could either screen shot it, or save it as a PDF, that would be awesome.

    As the RANZCR has already SAID that it should be mandated to advise patients of their risks if they have BC with dense breast tissue - why on earth are they waiting ANOTHER YEAR, discussing whether to or not?

    They've already made their statement saying YES, it needs to be done - and THEY ARE THE EXPERTS.  So, it doesn't make sense - and it only delays more women finding out their own breasts may be their downfall - and many with a more advanced BC diagnosis, straight up, possibly even terminal.  :(

    From last year on the ABC - another powerful article .... make sure you click on the 'drop down tags' too ..
    https://www.abc.net.au/news/health/2023-05-18/breast-density-cancer-screening-explainer/102338008?fbclid=IwAR0YRHufOYxb11pxpj5eGd9usEXNG9ve2D_-X3zeLCPhqvNtPrsE-7K4e4w

  • smillsbcna
    smillsbcna Member Posts: 2
    edited January 12
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    Hi everyone, Sam here from the Policy & Advocacy Team at BCNA. This is such an important conversation and is a key priority for us this year as we are engaging with the national review of BreastScreen which includes consideration of things like risk stratification and the reporting of breast density.

    BreastScreen Victoria is now the latest state/territory BreastScreen service to make a commitment to report breast density - although this has not yet been implemented. We will be advocating for the remaining services to follow suit as soon as possible (QLD and NSW likely to be looking at this in 2025). 

    Whilst we join the RANZCR in the position that breast density should be reported - we do acknowledge the counter arguments that exist. One of these is that currently the majority of alternate screening techniques recommended for women with high breast density such as contrast-enhanced mammography (CEM), ultrasound, or MRI are not funded by Medicare and incur high out-of-pocket costs. It is an ethical dilemma in telling someone they have high breast density and also advising them that they may not be able to access the screening that they need due to how much it costs. 

    It is still our position that we must empower consumers with this information, but we acknowledge the parallel piece of work we need to do to advocate for these alternate screening techniques to be subsidised for those who need it to ensure equity of access.

    I wanted to assure you all this is a top priority for us in 2024 and we hope to have some progress to share as soon as possible. Please reach out if you have any specific questions, the team is always here to help. 
  • arpie
    arpie Member Posts: 7,742
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    Hi Sam @smillsbcna

    It is Terrific that BCNA will be actively engaging with the national review of BreastScreen .... let's hope that it gets past the post this time for ALL states.  Weird that BreastScreen Vic has 'said' they will do it, but haven't implemented it ....

    Whilst not every woman may be able to afford an MRI if put to them as an additional 'screening tool', I am sure that many could at least find the cost of an Ultrasound within their ability to pay .... and that alone should hopefully give a more definitive diagnosis than just a mammogram - specially the 2D ones that are all that is available for rural/regional women - who once again have to accept substandard medical care than our city cousins - where gold standard care may be taken for granted. :(  It was the BreastScreen Bus in NSW that missed MY Lobular, just 4 months before my GP felt the tumours - and after my surgery, I asked for them to review my films (in full knowledge of my surgery) and they STILL couldn't 'see it' on the films - whilst my GP could 'feel it' with just a manual exam.

    What it boils down to, really, is the NEED for us TO HAVE THE CHOICE!  Knowledge is power.

    Here is the RANZCR document re mandating  the reporting of breast density in both screening and diagnostic settings in Australia and New Zealand ... (and BCNA gets a mention in the  References at the end.)

    I wonder if it was an accepted method of detecting earlier Testicular cancer, if it might be taken more seriously - or would they assume that men couldn't/wouldn't pay for it as well?