Best Of

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.

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'!    

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.

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. 

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.