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

Lisa_BCNALisa_BCNA Staff Posts: 140
edited June 2018 in Community news and events
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 [email protected] if you have questions.


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Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 3,251
    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.
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,142
    Totally agree @arpie.  I had 2 very widespread invasive lobular tumours (plus a small sneaky ductal tumour) that hadn't shown up on previous mammograms and only one was partially visible when I had the mammogram and ultrasound that finally confirmed my diagnosis - I was only alerted to the possibility of breast cancer when I had an inverted nipple.

    Lobular cancers are notoriously difficult to pick up via mammogram as they often don't look like a lump or mass. My GP had mentioned that my previous mammograms had shown I had dense/ lumpy breast tissue but there was no discussion about increased risk, despite my mum also having had the disease. I had been having mammograms since I was in my early 40s as I was worried about developing bc, and paid for private mammograms every couple of years - clearly I needn't have bothered :(
  • arpiearpie Mid North Coast, NSWMember Posts: 3,251
    I also sent  messages to many of my female friends to fill in the survey, to ensure that if they have dense breast tissue, that they are told - to hopefully make them aware that they 'may be more at risk' of developing BC, especially as we age.

    One buddy (who is a Top Young radiologist) shot me this info!!  Well worth a read.

    I have worked at Breastscreen and in private radiology clinics and all mammograms are independently double read by either two specialist radiologists, or a computer program plus a radiologist.

    Only certain types of breast cancer are detectable on mammogram (fortunately, it is the most common one which is detected) - mammograms look for tiny microcalcifications which are only seen in a few types of breast cancer.

    Ultrasound will also only detect certain types of breast cancer, and again MRI will only detect certain types of breast cancer.

     Essentially, I do agree that there needs to be more awareness about the limitations of mammograms in people with dense breast tissue (the other issue is cancer is white on mammogram as is dense breast tissue white - so dense breast tissue hides it!).

     I really don't want you to discourage people from having mammograms - they absolutely have their use, but again, have their limitations as they are only a screening test not a diagnostic test.

  • onemargieonemargie queenslandMember Posts: 1,241
    edited June 2018
    Very pissed off as I was told after my first mammogram and ultrasound at age 40 that I had very dense breasts but never at any stage was I told this can increase my risk of breast  cancer. I only found that out on this forum and it wasn’t that long ago either if I had known that from the start I woiuld of had a prophylaxis double mastectomy without hesitation. I didn’t use breast screen either I used a private radiologist . I’ll do the survey Margie. X
  • kmakmkmakm MelbourneMember Posts: 7,664
    Same here @onemargie. It was this forum that alerted me to the issue. Miffed I was...
  • beccabeccabeccabecca Member Posts: 71
    @arpie
    I also have no confidence in mammograms as I had dense breast tissue & my 140mm/14cm tumor was not detected at all on mammograms or ultrasounds
  • beccabeccabeccabecca Member Posts: 71
    Breastscreen wldn't do a mammogram on me because I was under 50 with no family history 
  • beccabeccabeccabecca Member Posts: 71
    @Jane221
    So sorry to hear that your story is like mine, in my 40s & wasting money on private mammograms that showed nothing! Ended up with 140mm invasive lobular stage 3 when a biopsy was finally done, only cos I insisted something was wrong & someone listened to me
  • arpiearpie Mid North Coast, NSWMember Posts: 3,251
    @beccabecca
    I am So sorry to hear that!  I hope you are going OK now.  

    I hope that you (and others on the forum) actually DO the survey & also share all the 'italic' bits from my posts above to all your girldriends  and family members ..... cos it pays to be 'advised', specially if 'THEY' won't tell you that you have dense breasts - or you don't know the ramifications of having dense breasts.

    Their own current TV advertising admits that 80% of current diagnoses are from women with NO previous family history - so always go with your gut.

    There are SO many being diagnosed under 50 these days, too - it is so sad!  :( 
  • beccabeccabeccabecca Member Posts: 71
    Thanks, I will do survey
    & have been sharing my situation to warn others
  • Spirit-HarmonySpirit-Harmony Member Posts: 46
    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 
  • arpiearpie Mid North Coast, NSWMember Posts: 3,251
    @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  ;) 
  • nolsnols Member Posts: 1
    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. 


  • arpiearpie Mid North Coast, NSWMember Posts: 3,251
    @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.



  • SpillsySpillsy Hobart Member Posts: 88

    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!!

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