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Dense Breast info - which USA states advise their women .....

arpiearpie Mid North Coast, NSWMember Posts: 3,951
edited January 11 in Community news and events
This is a map of the USA - where the 'pink' currently show states that already advise 'some' of their women that they have dense breast tissue and may require further assessment by Ultrasound and/or MRI ..... but even the 'pink' states don't tell ALL the women!

No photo description available

This article Below indicates that the FDA is proposing to make it mandatory to advise women if they have dense breast tissue!   I can
only hope that Breast Screen Australia follows suit, when it comes thru in the USA.
https://www.health.harvard.edu/womens-health/dealing-with-high-density-breasts

Late last year, I actually received a letter from Breast Screen NSW telling me NOT to post on their Facebook page about the need for those with Dense Breast Tissue to be advised & to ask for an ultrasound .....  I was also posting the fact that Mammograms are available free of charge to all women in Australia aged 40 plus (NOT 50 plus as is in most of their advertising on TV and online.) They asked me to stop doing that too.  But I am keeping on doing the "Free from 40" bit, anyway!!  ;) 

So once the FDA comes thru and makes it compulsory for their breast screeners to advise women of their breast density - it should be a BIG kick up the arse for our own Breast Screening to do the same.

 



Comments

  • Keeping_positive1Keeping_positive1 Member Posts: 76
    edited January 11
    Good find @arpie, and good on you for calling it out and continuing posting on their page.  It is a positive that people know and are informed.  How do we know that we don't know if people don't let us know?

    Perhaps they don't want you to let the "cat out of the bag" as that would mean they are inundated with women wanting mammograms, and people pushing for 3D to be rolled out over all Breast Screen sites.  Breast Screen are already overstretched through inadequate funding.
  • June1952June1952 Member Posts: 913
    OMG @arpie - I cannot believe they would have the cheek to ask you not to post.
    Interested about the map as my penpal of 55+ years lives in Kansas.  Her sister had been told she had to have her 2 breasts removed - and later found out it was not cancer !!!
    Thanks for posting.
  • ~Millie~~Millie~ Member Posts: 61
    Keep up the good work advocating for women to get checked! 😘 Today, I was told, by a pharmacist who knew I had been through treatment recently that I “I looked well” (pity about my mental health.. and the 18% probability I’ll get cancer again and be dead by 53).. but then.. “you’ve put on weight “.. yes.. but less than 2kg.. since treatment, trauma, Christmas.. WTF?? These comments are not helpful. People’s perception is outstanding.. or lack there of... Take care everyone xx
  • arpiearpie Mid North Coast, NSWMember Posts: 3,951

  • SandesSandes Member Posts: 16
    Quote from the book  Radical : The Science, Culture and History of Breast Cancer in America by Kate Pickert

    "...Having dense breast tissue can hide a tumor on a mammogram and also increases the odds a woman will develop breast cancer. And yet, for decades, women with dense breast_ nearly half of all adult women and even larger share of young women_ were not told that the value of their annual screening mammograms was diminished by this fact. Women (in America) might still be in the dark if not for a Connecticut woman named Nancy Cappello. Diagnosed in 2004 with advanced breast cancer, just six weeks after a supposedly clear mammogram, Cappello learned she had dense breast tissue, which likely obscured her tumor on the screening test. After undergoing treatment, Cappello founded o nonprofit advocacy organization called Are You Dense? and started lobbying states and the federal USA government to pass laws requiring that mammogram results include information about breast density….At least thirty-five states now (2019) require women to be informed about their breast density after they undergo screening mammograms…. The information empowers women to talk to their doctors about whether further screening using other methods might be warranted. Sometimes this means MRI. More frequently, though, women at high risk of developing breast cancer are scanned with ultrasound"

    It is time Australian women have the same right. 

    Could BCNA lobby for this ?

  • SandesSandes Member Posts: 16
    I actually read now about BCNA support  for studies regarding policy changes for dense breast screening on the 
    post Breast density debate continues
  • ShakalkerShakalker Tamworth NSWMember Posts: 84
    I have/had dense breasts also. 
    Not only did the mammogram not pick up on my tumour, (ultrasound did)
    but both mammogram and ultrasound did not pick up my high grade DCIS, so during surgery (mastectomy) my surgeon did not know it was there and so margins were involved, chemo and radiation has hopefully taken care of what what left behind. This was a year ago now finally I’m going to have MRI, at a cost of $585, (no rebates) because I only had one close relative who has had breast cancer, if there were two, it would be Medicare rebatable. 🤨
  • arpiearpie Mid North Coast, NSWMember Posts: 3,951
    edited January 13
    Yep - anyone with half a brain knows that Mammograms alone aren't good enough to diagnose women with dense breast tissue, so it is incredible that BreastScreen Australia is still sprouting bullshit to Australian Women! ...  

    BCNA (and @JJ70 with her Can Do at 40 campaign on Facebook) has been advocating for some time that BreastScreen Australia changes their policies and informs women of their risk ...... in ALL states, not just Western Australia!

    But in the mean time, we need to advocate for ourselves - and make sure that we tell our friends, relatives and workmates of the risk of Dense Breast Tissue 'MIS-diagnosis'.  Yes, this means you should raise it with your son's girlfriends and wives!

    My own Ultrasound was 'unsure' and suggested a core biopsy was needed & that was when I was confirmed as Invasive Lobular Cancer (one of the trickier ones to spot on either Mammogram or US.)

    I was out to dinner last night with friends & a middle aged couple (Friends of one of our friends) joined us. With our general chit chat conversation, I said "And are you looking after yourself?"  I'd gauged her at being mid to late 40s.  She said "Yes"  I asked about Mammograms & she already had mammograms as she had a history of cysts (like me) and had been told that she had 'lumpy breasts' (like me) but had never heard of the heightened risk of mis-diagnosis with Mammograms not being suitable for dense breasts, like ours.  So, jumping onto my 'you need to know this' mantra I filled her in on the bullshit ...... and she will now pursue an ultrasound once back home again after their holiday!  

    Keep spreading the word!  Eventually it will become law in all states of Australia - that they HAVE to tell us our heightened risk of more advanced cancer, simply due to having Dense Breast Tissue!  :( 

    There is a Facebook Page you can join allied 'Being Dense' that will keep you up to date with World information on the subject!  Even if you just click on 'Follow' you'll be notified of any new posts.  ;)  

    Take care, ladies  xx
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