Australian women denied knowledge of their increased breast cancer risk
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 reporting555ViewsSign in to react to this post19Comments
Gah. Back again.
Almost seven years ago I roller-skated through Olivia Newton John hospital to Xanadu for my last radiotherapy session, post lumpectomy. Here I am again... another oestrogen positive cancer, same stoopid dense breast. It was picked up on MRI as it couldn't be seen through my milky dense breast tissue and after an MRI biopsy (such fun!!!) I was diagnosed last week. So now I'm up for a double mastectomy and trying to make reconstruction decisions. I'm thinking I may need to go the Johnny Diep Flap. Seeing the plastic surgeon tomorrow. Really glad you're here....497ViewsSign in to react to this post7Comments
AWAITING SECOND OPINION FROM WBCI
* Previous post was accidentally deleted by myself (fml) * Is there a cancer hiding somewhere in this moderate to highly dense Fibroglandular breast tissue of mine? HISTORY: Age: 36yo Menstruating since 11yo Endometriosis - surgery in 2022. 2 children - 10yo and 5yo Recurrent mastitis infections since the birth of first child. Spontaneous and recurrent mastitis infections since 2019 - NOT related to pregnancy or breastfeeding. Every time was treated with antibiotics except for this most recent episode which started a few weeks ago (July 2024). Struggled to breastfeed both children. No supply or milk production despite starting motillium. Also paid a private lactation consultant with my second child. She alerted to me to my dense breast tissue and said I must have regular scans as cancers can hide. My new GP said 'this is not normal - let's get a mammogram'. FAMILY HISTORY: Significant family history of hormonal cancers on paternal Fathers side. Both paternal Grandmother and paternal Grandfather have significant cancer prevalent on their entire family bloodline. Every female on both of those sides has had breast, cervical, ovarian cancers or precancerous cells Every male on both sides has had prostate cancer, enlargement and /or precancerous cells. SYMPTOMS THIS TIME: Pain and swelling in right breast Pain deep into my right armpit Right side Pea size palpable lump - felt by both GP and breast surgeon Red rash that comes and goes - also a ring around the lump Profuse night sweats hot flushes - in the right breast only! Nausea Loss of appetite Lost 10kgs within 6weeks More frequent bowel movements As of 01/08/2024 - yellowing of my eyes BLOODWORK: FBC completed. CRP was 1.2 - previous confirmed mastitis infections were 138-147 where I was hospitalized. NO true mastitis infection this time. Increased Albumin levels Increased Iron saturation and ferritin (over 10x my normal levels) Lowered phosphate Further bloods were ordered yesterday to check extra things as my eyes have started to yellow. MAMMOGRAM AND MRI Haven't even found or noted the palpable lump that myself and both doctors can clearly feel. Both mention moderate to high dense fibroglandular tissue. Mamm - says I should have routine 6 monthly checks / scans possible ductal ectasia evident MRI - says I am fine - notes a cyst - but this is not a round or oval - there is only spiculated mass in several areas, so where the hell is this apparent cyst?? *GP has confirmed that the Mamm and MRI are inconsistent and has requested both radiologists contact her urgently. She has also requested the Breast Surgeon follow through with a guided biopsy at minimum. As we all know, these little pests can hide in dense tissue. GENERAL BREAST SURGEON Advised me that he is a 'general' breast surgeon and all my symptoms etc are pointing towards something rarer like IBC. He was transparent with me and said he would refer me on to a specialized surgeon if the mamm and MRI come back clean, as he is also suspicious of my symptoms, bloods, and significant family history of hormonal cancers - including my Father and Biological Sister. He is continuing to see me until we can get an appointment with Westmead Breast Cancer Institute, as he does not want anyone to drop the ball on this. He agrees, I need urgent second opinion from surgeons / specialist who specialize in this field. I am impatiently waiting for the WBCI to call me with an appointment. Their booking nurses were on holidays or had covid last week so no bookings could be made. GP and Breast Surgeon have referred me to Prof Elisabeth Elder and Dr James French for a further investigation. So, I am awaiting their call as they are part of WBCI. My questions - How can radiologists get this so wrong? I have snapped all the images that look sus and will attach. How do I advocate really bloody hard for someone to do a biopsy? I have deep dived into research from all over the world to find answers, case studies etc. And thank god I did, so I know to push really bloody hard for further investigations. Seeing case studies with reputable surgeons and oncologists who see women being misdiagnosed every day due to the density of their breast tissue. Its petrifying! I am not Dr Googling. But I am definitely researching reputable studies so I can best advocate for myself so I can live a long healthy life with my family!! *********************************************************** any advice, surgeons' recommendations, words of wisdom welcome. See my images attached.407ViewsSign in to react to this post3Comments
BreastScreen NSW and Qld may be advising of your Breast Density in 2025 - cancer or not!
This article was in the Sun Herald yesterday ..... yet another woman who was given the all clear from BreastScreen NSW (same as me) only to have Breast Cancer diagnosed just months later. USA & UK are now advising their clients of their breast density & explaining the reason why a mammogram alone is not sufficient for women with dense breast tissue. BreastScreen WA and SA are also advising their clients too ..... WHY NOT ALL THE OTHERS? So it will be another year before this study is concluded, then they will no doubt argue long & hard on the 'yay' or 'nay' factors ...... whilst other women are being NOT diagnosed correctly, when they should have been. This is the article, below - you may need to expand it to read a couple of columns at a time, to make it easier to read ... Make sure you daughters/sisters etc are all aware that those living in NSW, Qld, Vic, Tas and NT - are NOT receiving the same 'duty of care' that BreastScreen WA and BreastScreen SA are giving THEIR clients. :( Mods - @Mez_BCNA - can Dense Breast Tissue please be added to the 'Popular Tag List' .... the only one I can see there is 'breast density' ... if you search by 'dense' or 'dense breast tissue' - nothing comes up435ViewsSign in to react to this post13CommentsCEM - Contrast Enhanced Mammography - anyone heard of it? Supposed to be good for Dense Breasts
I found this in one of my news feeds last week ..... and going by the pics (below the 'normal' Dense Breast Tissue Images) the CEM appears to show the cancer much more specifically in size and shape ..... Some people don't like having contrasts/injections - if it gave a clearer picture 'straight up' of your cancer .... would you say 'yes' to CEM? https://densebreast-info.org/screening-technologies/contrast-enhanced-mammography/?fbclid=IwAR2HggizaLVzYsSfROdCqhAO0fy-Ni9nnZNRZMRl637qVL-FVQDDrRsrJ9o If you have dense breast tissue - it would be worth checking out the rest of the site too!! https://densebreast-info.org/275ViewsSign in to react to this post11Comments
Breast Density
Hi all Am confirmed for the workshop on Breast Density here in Adelaide next Thursday 23 August. I am prepared to put any questions the blog has on this issue and report back on the responses. In addition I hope to upload a summary of what I learn on the day - just may need to be the week after as my twins are turning 18 that weekend and have 80th birthdays ( yep plural) on the Friday. As the workshop is 10 - 4 on Thursday will take any questions to the workshop that. I have up until 5pm the day before - Wednesday.742ViewsSign in to react to this post12Comments
Breast density - we want your input
Hi everyone BCNA is currently reviewing the webpage we developed last year around breast density to ensure we are keeping our members up to date with the latest research finding around breast density. There are two key issues we are concentrating on: · the concern that breast density may make it hard for doctors to detect breast cancer on screening mammograms and · that women may be unaware that breast density may increase their risk of developing breast cancer We want women to be able to make informed choices that are right for them and this means being advised if their mammogram shows they have dense breasts. We are aware however that there are complicated issues that have not yet been resolved by experts that may cause confusion for women. This includes lack of agreement around what advice doctors should give women around the best way to use information around breast density to aid early detection and prevention of breast cancer. Whilst we wait for development of clinical guidelines to guide the right and consistent advice women receive, BCNA is calling on your help to assist us develop a new webpage around breast density. This will help ensure we are keeping our members as up to date as possible and also help individual women found to have dense breasts formulate questions to ask their doctors around what this means to their individual risk. If you are available to assist in this review please contact me at [email protected] I would love to hear from you Best wishes Danielle1.6KViewsSign in to react to this post47Comments
Have your say - Survey on BreastScreen Australia’s Position Statement on Breast Density
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. 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. Please read BCNA’s webpage about breast density before you take the survey. BCNA member Kate has shared her story about breast density, which you can read here. 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. 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.1.1KViewsSign in to react to this post19Comments
Survey RE breast density.
A chance to have your say RE Breasstscreens statement on breast density. https://www.surveymonkey.com/r/BSApositionstatementonbreastdensity97ViewsSign in to react to this post0Comments
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