Australian women denied knowledge of their increased breast cancer risk
Mez_BCNA
Administrator, Staff, Member, Moderator Posts: 1,196 ✭
Approximately 10% of women have high breast density. At this point in time, thousands of Australian women are being denied important information about their breast health which could empower them to better understand and manage their risk of breast cancer.
BCNA’s Director of Policy, Advocacy and Support Services, Vicki Durston, says Australia’s approach to population-based screening is not keeping pace with growing evidence that supports routine reporting of breast density. This due to the absence of national reporting standards and a lack of software in publicly funded screening services that can effectively measure breast density.
“Every woman has the right to know and understand her breast cancer risk through standardised breast density reporting,” she says. “For those identified as high-risk or with high breast density, it is essential that clear options and pathways are available to support early detection and proactive risk management.”
Breast Cancer Network Australia (BCNA) is currently advocating for a unified national approach to reporting breast density through Australia's national population-based breast screening program – BreastScreen.
Mammography images showing the difference between spotting cancer in a fatty breast (top) vs dense breast (bottom). It's like "spotting a snowman in a snow storm".
You can read BCNA's media release via the link Australian
women denied knowledge of their increased breast cancer risk
Read ABC's feature piece on our advocacy efforts: Mandatory breast density reporting
BCNA’s Director of Policy, Advocacy and Support Services, Vicki Durston, says Australia’s approach to population-based screening is not keeping pace with growing evidence that supports routine reporting of breast density. This due to the absence of national reporting standards and a lack of software in publicly funded screening services that can effectively measure breast density.
“Every woman has the right to know and understand her breast cancer risk through standardised breast density reporting,” she says. “For those identified as high-risk or with high breast density, it is essential that clear options and pathways are available to support early detection and proactive risk management.”
Breast Cancer Network Australia (BCNA) is currently advocating for a unified national approach to reporting breast density through Australia's national population-based breast screening program – BreastScreen.
Mammography images showing the difference between spotting cancer in a fatty breast (top) vs dense breast (bottom). It's like "spotting a snowman in a snow storm".
Read ABC's feature piece on our advocacy efforts: Mandatory breast density reporting
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Comments
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Well done BCNA for advocating so strongly for us to be advised of our breast density & the risks associated with NOT knowing it.
It is slowly becoming standard for Supplemental ultrasound being recommended for women with dense breast tissue. This is a document showing which European countries recommend it as at 2024 ....
https://densebreast-info.org/wp-content/uploads/2024/12/Table-Europe-Guidelines122724.pdf3 -
@BCNA Thanks for advocating! I had known for some time I had dense breast tissue but didn't understand anything about it until after my bilateral mastectomy when pathology tests showed a second lot of cancer that wasn't picked up in the screening due to the extent of dense tissue. I've since been trying to learn more about dense breasts & if it's hereditary etc. BCNA, thanks for bringing this to our attention1
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Thanks for advocating. I was fortunate to have a gp who sent me for a mammogram at 40. She told me I needed a mammogram and ultrasound every year because I had dense breasts. It was because of this yearly mammogram and ultrasound my early breast cancer was diagnosed. Keep pushing BCNA2
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I am all for the advocacy but isn’t this also a major communication issue? Dense breasts and difficulties in detection have been known for a long time now, so perhaps it needs a more overt awareness campaign. It’s still possible to read stories of women with unusual breast issues who nevertheless wait for months before seeking medical
help. COVID hasn’t helped, we know, but neither does the anti vaccine/ anti radiation/anti science wave we are dealing with, especially for younger women getting their information from social media.1 -
The way I see it, @Afraser is that most women aren't even aware of their breast density at all, let alone the added risks of having dense breast tissue, until after they've already been diagnosed & had surgery.
I was one of them - a passing comment by my surgeon made me aware of it, post op - but I was never aware of any added risk. I found out about that info here, on the forum.
This advocacy, if it reaches enough younger women (or the older women make sure they are aware of it) will hopefully (if BSNSW doesn't start advising their clients soon) then know to ask about it.
Maybe we should do a poll to ask members with/without dense breast tissue
1) Did you know you had dense breast tissue prior to diagnosis/surgery but not told of the risks it entailed?
2) Did you know you had dense breast tissue prior to diagnosis/surgery and was told of the risks it entailed?
3) Did you NOT know you had dense breast tissue prior to diagnosis/surgery & unaware of any risk.
4) You were diagnosed with ILC and your mammogram missed it due to dense breast tissue.
5) You know that you don't have dense breast tissue.4 -
Wouldn't it be amazing if there was a blood test that provided early detection of breast cancer? That could drastically solve the breast density problem. Is there anyone close to developing something like this?2
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I remebered to ask my sister about hers recently, and was good to hear that yes density score was on her report from Chris O Brien. But she doesn't go to breast screen , has higher screening rate, annual check ups, ever since my BC experience. Would be good if breast screen did density reporting too- as long as they tell women what it means and actually give them an ultrasound as well.3
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I still haven’t been advised one way or the other
shame really. I still have my 1st mammogram pictures but never got a copy of the report.I wonder How long have they known that dense breast need to have ultrasound as well.2 -
I was like @arpie. I wasn’t advised about my breast density at the time of my initial diagnosis, but I have since asked my surgeon to advise me when I had my ultrasound sound and 3D mammogram at the 12m check up.
The relevance to me of breast density only became evident through the resources on this forum about Invasive Lobular Carcinoma (ILC) and how breast density can make it harder to diagnose instances of ILC. In my case, even though my initial treatment for ILC had been completed, breast density was still relevant to the adequacy of the ongoing monitoring and screening tests recommended by the oncologist and surgeon.3 -
You've nailed it, @Tri - it is the limitations of mammograms particularly for those diagnosed with ILC that are at even more risk of not being diagnosed - as ILC doesn't 'present' as lumps - it is more like 'strands' - and it is usually slow growing. It may have been there for years & missed on every mammogram, until, in my own case, my GP found it on a random manual check (even tho I had a clear mammogram just months before.) She had a standard procedure of doing both Breast and Pap smear checks at the same time.
Lumps are hard enough to detect with dense breast tissue, let alone thin strands! Hence the need for being advised of breast density early in the piece & ultrasound to be standard follow up procedure once it is identified on the mammogram.
I've added ILC & missed mammogram to the possible 'poll'!
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I was similar to @Arpie and @Tri - found out I had dense breasts from screening at the time of diagnosis (IDC). No info on density from prior mammograms with BreastScreen. My breasts were more than 75% dense.
I have provided written feedback to BreastScreen WA requesting they advise women with dense breasts of their circumstance. I feel this is a simple improvement that can be made with little effort (just an addition to the report they already provide following a mammogram) and has potentially large prevention/down-staging ramifications.
Great that BCNA is advocating for this at a national level.2 -
For many years I've had non-BreastScreen mammograms routinely every second year because I've had a history of breast cysts and so I've always wanted to have an ultrasound as well as the mammogram. Whilst I knew I had dense breasts which can make radiography reporting difficult I did not realise until after my diagnosis that having dense breasts in itself is a risk. No one (doctors) had ever advised me this be the case.
So after 5 years of being told everything was ok and I only have "fibrocystic disease", including my last mammogram and US only 2 months prior to my noticing an abnormality of my breast, I was diagnosed with Stage 3 breast cancer (>5cm and positive nodes)! I admit my cancer presented in a lobular pattern which also made it hard to see on the mammogram and US imaging but my MRI sure lit up like a Christmas tree.
I know doing MRIs is much debated and not routinely offered but I could have got diagnosed years ago at a much earlier stage if this had been recommended because of my dense breasts. Hopefully the future of contrast mammography will be a good alternative. There has to be better ways of monitoring and diagnosing as I was not diagnosed on either the mammogram or the ultrasound.
For me it is annoying that no one had ever discussed my breast cancer risk because of my having dense breasts itself or recommended that I could attend a breast clinic for better monitoring beyond the routine testing I had routinely done in good faith.3 -
I've never had an MRI yet .... and was diagnosed 7 years ago. ILC is usually 'slower growing' than some of the other BC Cancers ... but that isn't necessarily a 'comfort' .... cos, until they LOOK, they just don't know!
In my opinion, if they do an MRI earlier, they see the entire body, identifying early possible spread .... MUCH earlier than just a mammogram or ultrasound. It HAS to be cost effective, as, if our diagnosis is made earlier, it also means requiring less expensive treatments, earlier!
And those in Rural, regional and remote areas need to know that the Breastscreen Buses DO NOT have 3d/Tomosynthesis mammography .... they only have 2D Mammograms - which are NOT picking up Invasive Lobular Cancer .....
If you've not advised to have an ultrasound or MRI yet ... just be aware that you may NEED ONE! 2
