Forum Discussion
- arpieMemberIt is PATHETIC! They SEE the dense breast tissue there on the screen, whilst you are there ... and yet they continue to refuse to tell you that you have a ticking time bomb in your body.
- AllyJayMemberAccording to the Breast Cancer Foundation, just under 1000 women under the age of 40 will be diagnosed with breast cancer (2020 figures). When I pointed out those stats on their facebook page and asked why they advertise that women over 50 are invited etc etc etc and make no mention that free screening can be done in younger women, they deleted my comment and question.
- FLCloverMemberAnd there you go! A perfect example 👆🏻 Of how they are failing women. Even worse, because you think oh yeah, I’ve had a mammogram and it was clear, I’m good to go! Meanwhile, the bastard is growing inside, but you think you’re ok cos the experts told you you are. Not good 😠😠
- Julez1958MemberHi there
I have been having mammograms since the age of 40 ( am now 62) as I thought I felt a lump but was told I just had lumpy dense breasts.I was never told that dense breasts was in fact an extra risk factor for breast cancer.
I initially went to a private breast clinic in Sydney and every time would also have an ultrasound on both breasts and a breast surgeon would examine my breasts.
When I retired I started going to a free Breastscreen NSW clinic and although I had mammograms twice in a 4 year period they didn’t pick anything up.
I found a lump myself ( by accident , I regret to say I was not in the habit of examining my breasts myself).
it turned out to be lobular and 5.5cm resulting in a need for a mastectomy.
I don’t have the energy to agitate with Breastscreen about it right now while I am still undergoing treatment, but I do feel somewhat upset.
Over and above the usual I mean! - FLCloverMemberI agree with all you ladies. Women should be told. I didn’t even know breast tissue could have different density, so of course I wouldn’t have asked for more than a mammogram. Before all this, I knew absolutely nothing. So me not asking wouldn’t have been because of a lack of interest but because of ignorance. What I choose to do with that information is my business, but we definitely should be told!!! I wanted to have an ultrasound because my breasts were naturally lumpy. If I’d known about density as well, I would’ve been at my docs every year requesting scans! And that is what they don’t want. To pay for extra scans because a ‘woman thinks she might have something.’ Not important in their eyes. Stuff them. Our lives are important and we need to fight for them. Good on you @arpie!! 💪🏻👏🏻
- @arpie Fingers crossed your link posts to BreastScreen NSW's Facebook page. They often delete posts that contradict their propaganda and the result is a Facebook page that is not much more than a mutual admiration society.
As you know, BreastScreen NSW is not equipped to detect ILC. Their 2D mammograms (in their facilities and on the buses) are not known for detecting ILC; combine that with poor imagery due to dense breast tissue and the result is, as you experienced, an all-clear (false negative) letter despite having breast cancer. You were saved by your switched-on GP, whose investigations led to a diagnosis just months after your all-clear from BreastScreen NSW.
The implications for BreastScreen's failure to obtain better images from 3D mammograms and ultrasounds for women with dense breast tissue, and thereby earlier detection, is later stage diagnoses, more aggressive treatments, and potentially death.
I agree with @Afraser. It is my right to be informed about my body. It is indefensible that BreastScreen (except WA) refuses to assess and report breast density to women and their GP. The radiographer knows when she's taking your images, the radiologist knows when they're reading your images but they cannot say anything. BreastScreen Australia has bought their silence. I'll call it for what it is - dereliction of duty. - @arpie Fingers crossed your link posts successfully to BreastScreen NSW's Facebook page. They delete posts that contradict their propaganda and the result is a Facebook page that's a mutual admiration society.
Here's a link to the discussion I initiated earlier this year about the abject failures of BreastScreen NSW in which we shared comments -https://onlinenetwork.bcna.org.au/discussion/23163/two-things-about-breastscreen-nsw
For women like you who with ILC, BreastScreen NSW isn't equipped to screen for it. Their screening 2D mammograms (in their facilities and on the buses) combined with dense breast tissue mean they are unlikely to detect ILC. Thus you received an 'all clear' (false negative) letter from BreastScreen NSW only to be diagnosed just months later due to investigations initiated by your switched-on GP.
If you'd been screened at a private clinic it's likely the reading radiologist would have flagged your dense breast tissue and recommended ultrasound and a 3D mammogram for better images...and you would have received your ILC diagnosis. Your GP saved you. Otherwise you would have continued on your merry way, undetected but with a cancer that would have continued to grow.
I agree with @afraser. It's my right to know about my body. It is indefensible that BreastScreen (except WA) does not inform women about their breast density. The radiographer knows by looking at your images as she takes them, the radiologist knows when reading your images but they can't say anything. BreastScreen Australia has bought their silence, and refuses to assess and report breast density to a woman and her GP. I'll call it what it is - dereliction of duty. - AfraserMemberTo be fair, I am a right Lucy - not happy until I know more than is good for me! The article is clear that women who are told they have dense tissue face costs in establishing their cancer status - so for some, the advice may just cause anxiety that’s not easily fixed. I still think they should know, but I appreciate that there is a problem for BreastScreen if it can’t easily and cheaply provide a better and more informative scan.
- arpieMemberSadly, @afraser .... BreastScreen NSW continues to REFUSE to advise their clients of their breast density. :(
I have had heated discussions with them, telling them it is malpractice by non disclosure (as my own mammograms missed my own BC - only found by my GP 3 months after a ‘clear’ MG!) .... and can lead to a terminal diagnosis in their client, when it should have been picked up earlier with an ultrasound - if they only knew they had dense breast tissue! An ultrasound (at the very least) should be an automatic addition to MG for those with dense breast tissue.
If a mechanic saw an issue in a car that later caused a the car to crash ..., and DIDN’T advise them to get it fixed .... I am sure they’d be charged with manslaughter, if that person died.
Well ..... women ARE dying from not being diagnosed earlier than they should have.
I believe that BreastScreen WA is the only one who DOES advise their clients.
i am now including this link on BSNSW’s Facebook page ...... I expect to be told off shortly! - AfraserMemberThat’s a no brainer - any woman is entitled to know about her own body.