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University says women should be advised of their Breast Density!!

arpiearpie Mid North Coast, NSWMember Posts: 4,630
South Australia Uni says that women SHOULD be advised of their breast density as it has such a bearing on their 'not so early' diagnosis .... 

https://www.adelaide.edu.au/robinson-research-institute/news/list/2020/12/09/women-should-be-told-about-their-breast-density-when-they-have-a-mammogram
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Comments

  • PV123PV123 Member Posts: 200
    Thanks @arpie
    We do need to be advised about breast density, if I had known I had dense breasts I might have been more vigilant with the mammograms and ultrasound.
  • AfraserAfraser MelbourneMember Posts: 3,424
    That’s a no brainer - any woman is entitled to know about her own body. 
  • AfraserAfraser MelbourneMember Posts: 3,424
    To be fair, I am a right Lucy - not happy until I know more than is good for me! The article is clear that women who are told they have dense tissue face costs in establishing their cancer status - so for some, the advice may just cause anxiety that’s not easily fixed. I still think they should know, but I appreciate that there is a problem for BreastScreen if it can’t easily and cheaply provide a better and more informative scan. 
  • NoShrinkingVioletNoShrinkingViolet Member Posts: 26
    edited April 14
    @arpie Fingers crossed your link posts successfully to BreastScreen NSW's Facebook page.  They delete posts that contradict their propaganda and the result is a Facebook page that's a mutual admiration society.

    Here's a link to the discussion I initiated earlier this year about the abject failures of BreastScreen NSW in which we shared comments -https://onlinenetwork.bcna.org.au/discussion/23163/two-things-about-breastscreen-nsw

    For women like you who with ILC, BreastScreen NSW isn't equipped to screen for it.  Their screening 2D mammograms (in their facilities and on the buses) combined with dense breast tissue mean they are unlikely to detect ILC.  Thus you received an 'all clear' (false negative) letter from BreastScreen NSW only to be diagnosed just months later due to investigations initiated by your switched-on GP. 

    If you'd been screened at a private clinic it's likely the reading radiologist would have flagged your dense breast tissue and recommended ultrasound and a 3D mammogram for better images...and you would have received your ILC diagnosis.  Your GP saved you.  Otherwise you would have continued on your merry way, undetected but with a cancer that would have continued to grow.

    I agree with @afraserIt's my right to know about my body.  It is indefensible that BreastScreen (except WA) does not inform women about their breast density.  The radiographer knows by looking at your images as she takes them, the radiologist knows when reading your images but they can't say anything.  BreastScreen Australia has bought their silence, and refuses to assess and report breast density to a woman and her GP.  I'll call it what it is  - dereliction of duty.
  • NoShrinkingVioletNoShrinkingViolet Member Posts: 26
    edited April 14
    @arpie Fingers crossed your link posts to BreastScreen NSW's Facebook page.  They often delete posts that contradict their propaganda and the result is a Facebook page that is not much more than a mutual admiration society.

    As you know, BreastScreen NSW is not equipped to detect ILC.  Their 2D mammograms (in their facilities and on the buses) are not known for detecting ILC; combine that with poor imagery due to dense breast tissue and the result is, as you experienced, an all-clear (false negative) letter despite having breast cancer.  You were saved by your switched-on GP, whose investigations led to a diagnosis just months after your all-clear from BreastScreen NSW.

    The implications for BreastScreen's failure to obtain better images from 3D mammograms and ultrasounds for women with dense breast tissue, and thereby earlier detection, is later stage diagnoses, more aggressive treatments, and potentially death.

    I agree with @AfraserIt is my right to be informed about my body.  It is indefensible that BreastScreen (except WA) refuses to assess and report breast density to women and their GP.  The radiographer knows when she's taking your images, the radiologist knows when they're reading your images but they cannot say anything.  BreastScreen Australia has bought their silence.  I'll call it for what it is  - dereliction of duty.
  • FLCloverFLClover Sydney Member Posts: 953
    I agree with all you ladies. Women should be told. I didn’t even know breast tissue could have different density, so of course I wouldn’t have asked for more than a mammogram. Before all this, I knew absolutely nothing. So me not asking wouldn’t have been because of a lack of interest but because of ignorance. What I choose to do with that information is my business, but we definitely should be told!!! I wanted to have an ultrasound because my breasts were naturally lumpy. If I’d known about density as well, I would’ve been at my docs every year requesting scans! And that is what they don’t want. To pay for extra scans because a ‘woman thinks she might have something.’ Not important in their eyes. Stuff them. Our lives are important and we need to fight for them. Good on you @arpie!! 💪🏻👏🏻
  • Julez1958Julez1958 SydneyMember Posts: 44
    Hi there
    I have been having mammograms since the age of 40 ( am now 62) as I thought I felt a lump but was told I just had lumpy dense breasts.I was never told that dense breasts was in fact an extra risk factor for breast cancer.
    I initially went to a private breast clinic in Sydney and every time would also have an ultrasound on both breasts and a breast surgeon would examine my breasts.
    When I retired I started going to a free Breastscreen NSW  clinic and although I had mammograms twice in a 4 year period they didn’t pick anything up.
    I found a lump myself ( by accident , I regret to say I was not in the habit of examining my breasts myself).
    it turned out to be lobular and 5.5cm resulting in a need for a mastectomy.
    I don’t have the energy to agitate with Breastscreen about it right now while I am still undergoing treatment, but I do feel somewhat upset.
    Over and above the usual I mean!

  • FLCloverFLClover Sydney Member Posts: 953
    And there you go! A perfect example 👆🏻 Of how they are failing women. Even worse, because you think oh yeah, I’ve had a mammogram and it was clear, I’m good to go! Meanwhile, the bastard is growing inside, but you think you’re ok cos the experts told you you are. Not good 😠😠
  • AllyJayAllyJay Member Posts: 750
    According to the Breast Cancer Foundation, just under 1000 women under the age of 40 will be diagnosed with breast cancer (2020 figures). When I pointed out those stats on their facebook page and asked why they advertise that women over 50 are invited etc etc etc and make no mention that free screening can be done in younger women, they deleted my comment and question.
  • arpiearpie Mid North Coast, NSWMember Posts: 4,630
    It is PATHETIC!  They SEE the dense breast tissue there on the screen, whilst you are there ... and yet they continue to refuse to tell you that you have a ticking time bomb in your body.

  • FLCloverFLClover Sydney Member Posts: 953
    @AllyJay They what???!!? 😡😡😡 I’m one of those women diagnosed under 40. I had no idea we could have mammograms, or that we should. Clueless. Cheap bastards 🤬🤬🤬🤬
  • Cath62Cath62 Brisbane Member Posts: 182
    I never knew of the connection between dense breast tissue and breast cancer. I had dense breasts and cysts. My cancer cells were aggressive.  lump 2cm, no lymph involvement. Surgery, chemo  radium and now tamoxifen. My cancer was found at my mammogram and ultrasound annual check. I also didn't know tamoxifen reduces breast density and there has been some discussion that it could be used at a preventive for women that have dense breasts. 
  • KattykitKattykit Member Posts: 249
    Whenever I see the adverts from breastscreen Aust I get my pen out and change the 50 to 40, I'm in WA so we are informed about dense breasts but they still don't let women younger than 50 know they are eligible for free screening. 
    Having said that I was living in country NSW when I was first diagnosed,  my original tumour was 7cm so I wonder if my earlier screening would have found it if I'd been offered an ultrasound. I guess I'll never know, its too late now anyway I'm stage 4, that horse has definitely bolted.
  • Cath62Cath62 Brisbane Member Posts: 182
    Oh @kittykat that sucks. Sending hugs 🙏.

     It should be aged 40 for every woman  at least to find out if they do have dense breasts so they can have both mammogram and ultrasounds yearly from aged 40. If a woman's mother had dense breasts that too should enable early screening to detect bc early. I live in qld. I had a mammogram at 40 and from that time my gp said I should have a yearly mammogram and ultrasound but I didn't understand why and I never knew I was in a high risk group. 
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