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Have your say - Survey on BreastScreen Australia’s Position Statement on Breast Density

Lisa_BCNA's avatar
Lisa_BCNA
Member
7 years ago
Hi all,

The Australian Department of Health is considering whether BreastScreen Australia’s Position Statement on Breast Density needs to be changed. The Department has commissioned Allen + Clarke, a consulting company, to undertake a short, online survey to get the views of researchers, clinicians and women who use BreastScreen services.

Currently, women who participate in BreastScreen are NOT routinely told about their breast density. The exception is the WA BreastScreen Program, which sends a letter to the woman and her GP if the woman is assessed as having very dense breasts.

It can be harder to detect cancers on mammograms of women with very dense breasts as breast density can hide or 'mask' breast cancers. Research has shown that having very dense breasts is also a risk factor for breast cancer.

This survey is an important chance to share your views about whether or not BreastScreen Australia should talk to women about breast density.

While more scientific research is needed to help health professionals understand how women with very dense breasts can best be screened and/or manage their breast cancer risk, many women argue that they want to be told.

The survey will close on 27 June 2018. Your responses are anonymous.

Tips on taking the survey

Some of the survey questions have been written in a complicated way. We have developed the following tips to help you have your say.

  1. Please read BreastScreen Australia’s Position Statement on Breast Density before you take the survey. The survey asks if you have read the Statement and you cannot proceed with the survey if you answer ‘no’.

    If it's easier, you can read a summary of the Position Statement on the Information Forum on Mammographic Density (INFORMD) website.
     
  2. Please read BCNA’s webpage about breast density before you take the survey.
     
  3. BCNA member Kate has shared her story about breast density, which you can read here.
     
  4. Question 6 of the survey asks what ‘evidence-based’ changes you would like to see to the position statement and asks you to provide ‘citations’ (e.g. journal articles). Please don't be put off by the language in this question. BCNA has provided feedback to Allen + Clarke that women’s views are important and should not need to be ‘evidence-based’.

    We encourage you to share your views about breast density in the open-text boxes at either question 6 or question 7 and not to be concerned with the way question 6 has been asked.
     
  5. You can skip questions (i.e. leave them blank), but please make sure that you click through to the end of the survey and click ‘submit.

How to participate?

You can take the survey here: https://www.surveymonkey.com/r/BSApositionstatementonbreastdensity.

Please also don’t hesitate to email the BCNA Policy Team on policy@bcna.org.au if you have questions.


Published 7 years ago
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breast-density
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  • JuMuKu's avatar
    JuMuKu
    Member
    7 years ago
    It’s good to read  about your views on to ‘tell, or not’. I’m going on 23rd. Hope to see you there if you can make it.
  • Lisa_BCNA's avatar
    Lisa_BCNA
    Member
    7 years ago
    Hi everyone,
    I just wanted to say thank you to everyone who shared their experiences and views on breast density. As @arpie has said, the survey is now closed. We will keep you updated about any developments via our website.
    Warm regards,
    Lisa 
  • arpie's avatar
    arpie
    Member
    7 years ago
    LAST CHANCE TO DO THE SURVEY!!

    IT ENDS AT MIDNIGHT TONIGHT!!

    We DESERVE to be informed!   If ANYONE’s BC is picked up earlier as a result of BEING INFORMED .... that is a BIG WIN already!
  • wendy55's avatar
    wendy55
    Member
    7 years ago
    I was part of the Breascreen SA debacle,mammograms since I was 40 my choice,2 first degree relatives had early breast cancer, one was only 29 the second 57, breastscreen aware of this, was recalled twice but fortunately only cysts, had my mammpgram in 2013, sent a letter all good, then a letter later to say that my mammogram was included in the ones where sa was changing over to digital from analogue,in February 2013, I received more notification to say that my mamogram had been looked at again by supposedly 3 independent radiologist, and that I was given the all clear{I have all of my paperwork},in June of 2015, I was told I had stage 4 advanced breast cancer with tumours in my liver and spine, I was told by the surgeon that he could not help me, did I know an oncologist? and the statistics were 7 years, very nice, thank you.
    I too had dense breasts, there is of course a lot more to this story, suffice to say you cannot beat the system,or the government or doctors, I know I tried, 28th of June it will be 5 years since those words were spoken to me, 
    I thank BCNA, for all they have done are are doing, why in this country can one state get it right and the rest not.
    Had I known I would have had a ultra sound 3 d mammogram mri, whatever it took to find out this life shattering diagnosis,
    There also needs to be better communication with GPs, not once did ever a GP ask me if I had had a mammogram or even thought about it, it was my desicion to take myself off to the breastscreen sa at age 40 and demand a mammogram because of family history!!!This has to be changed, there are so many stories of women, similar to mine and all of the above, oh and I forgot to add I had early ovarian cancer at age 29,surgery,radiation,hysterectomy the works, and yet it still did not ring any alarm bells for anyone,I now tell any woman who will listen to me, if something doesnt feel right with your body, it probably isnt and if your doctor wont listen then find one who does, I did and it saved my life at 29!!!
    wendy55
  • Spillsy's avatar
    Spillsy
    Member
    7 years ago

    Same here, mammograms since 41..... 2 "clear" aged 45.... 5 cm tumour of nowhere!!! I wasn't told a thing, and didn't think or know anything about breast density, being both a risk factor and reducing tumour detection..... thought I was doing the right thing, as I had 2 older female relatives that had breast cancer. Its a disgrace that all Australians aren't given this information, uniformly across Australia, and not just in WA...… My GP didn't really know anything about this either! Also said that dads side relatives weren't an issue!!

  • arpie's avatar
    arpie
    Member
    7 years ago
    @nols

    I am SO sorry that you have been thru all this added stress & surgery - when in reality, it SHOULD have been caught SO much earlier. 12cm - that is massive!  :( 

    I simply CANNOT believe that BreastScreen Australia have the opportunity to ADVISE women that they have dense breast tissue - and don't!    :(     If WA can do it, NSW can do it.

    I WAS aware that I had 'lumpy' breasts ..... but NOT aware of any increased risk of not being detected/diagnosed ... matter of fact, the 'so called clear' mammograms actually gave us a sense of false security.

    Even if they had said it in their 'letter' afterwards ..... where they 'cover themselves' by saying there is no guarantee that you DON'T have cancer!  They could add it right there - that women with dense breast tissue or 'lumpy' breasts - should have different tests & maybe BYPASS mammograms altogether.



  • nols's avatar
    nols
    Member
    7 years ago
    Like so many of you, I'd spent copious amounts of time and money over the years having regular mammograms and ultrasounds that proved to be futile.  Early 2015 I was diagnosed with a 12cm lobular carcinoma that had also invaded my axillary nodes.  I had been to the doctors a few months prior with some concerns only to be told that it was too soon to do another mammogram but another ultrasound was organised.   Again I was told no further action was required....how wrong were they!!!.  Eventually I spoke to another GP at the clinic and I was referred to a Breast Specialist immediately.  My scenario; mastectomy and full axillary node clearance, 6 months chemo, 7 weeks radiotherapy followed by removal of ovaries (so I didn't have to have monthly injections) plus letrozole for the long haul.

    In the midst of all this, I stumbled upon some peer-reviewed journal articles from the US that stated that women with dense breast tissue are at increased risk of developing breast cancer!!!  At no stage did any of the health professionals I'd been dealing with made me aware of this.  Yes, I knew that my breasts were dense, but I had faith in and trusted my GP in that everything that could be done was being done.  I had been extremely fit and healthy, no family history, however I was in my
    early fifties.

    Again, after the fact, I was told by a cancer radiotherapist that mammography is virtually useless in detecting tumours in dense breasts!!! 

    I, along with all of you should have been made aware of this information so as to make informed choices.  To say that I am extremely angry and disappointed is an understatement.  My annual check-ups now also include an MRI (which I pay full amount for)....which helped to confirm the original diagnosis.  Had I known this diagnostic tool was available, I certainly would have requested it. 


  • arpie's avatar
    arpie
    Member
    7 years ago
    @Spirit-Harmony

    Make sure you read the 2nd bit in italics as well from my buddy, the radiologist .... as the 3 main methods of BC detention ALL play a part ... so I don’t want people to think ALL mammograms are useless .... just not necessarily the one for women with dense breast tissue  ;) 
  • Spirit-Harmony's avatar
    Spirit-Harmony
    Member
    7 years ago
    arpie said:
    DONE!  I've picked out parts of their own blurb showing that their 'statement' totally inconsistent & misleading!

    It says that 
    ''Higher breast density is associated with an increased risk of breast cancer''  and    
    "Breast density also has an impact on screening mammography, as it can lead to a lower accuracy or ‘sensitivity’ for cancer detection."

    I have 'dense breasts' yet NONE of my mammograms picked up MY breast cancer, even tho the GP had PINPOINTED IT ACCURATELY on the mammogram request on the same day that the Ultrasound showed inconsistency & a subsequent Core Biopsy proved the presence of Invasive Breast Cancer.  

    A Mammogram is only as good as the person 'reading it & giving the report'!  In my case - they must have been asleep! They obviously didn't read the Mammogram Request - or they would have SEEN where the tumours were!

    It also says  "Although women with dense breast tissue have an increased risk of breast cancer, the risk is less than having a first degree relative who is diagnosed with breast cancer before menopause (which doubles the risk)"

    If we are to believe the current Breast Cancer Advertising on TV -  8 out of 10 women diagnosed do NOT have ANY relative diagnosed with breast cancer (as in MY case)...... so only 20% DO have relatives diagnosed ...... who do YOU think has the greater risk of developing BC?   It is the 80% that need more accurate screening - NOT the 20% who already know their risk!

    The information in this document is misleading and inconsistent.

    It agrees that women with Dense Breasts are at increased risk at developing Breast Cancer but then says it is not worth Breast Screen Australia recording the statistics of the number of women presenting for Mammograms with Dense Breasts!  They have the perfect opportunity to do so ..... and yet it is not a part of their mandate!

    Women with Dense Breasts need to be ADVISED of their increased risk of developing Breast Cancer (as currently occurs in WA) & they should also be given yearly (or 2 yearly) Ultrasounds at the very least, bypassing Mammograms altogether (as that is basically an unnecessary double service.)

    From my own experience - I have NO CONFIDENCE IN MAMMOGRAMS AT ALL as a direct result of my recent diagnosis of Invasive Lobular Carcinoma  - and I recommend all my friends to have Ultrasounds now - even if they have to pay for it.

    I have Dense Breasts and was NOT AWARE of my increased risk of developing Breast Cancer.
    I will talk to my GP about this, this afternoon, I also have very dense Breasts and did not know this.. thank you @arpie 
  • beccabecca's avatar
    beccabecca
    Member
    7 years ago
    Thanks, I will do survey
    & have been sharing my situation to warn others
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