Mammographic/breast density

kmakm

My surgeon had to re-excise because he didn't get clear margins. In the piece of tissue removed that time they found a 4cm "dogleg" of very active DCIS that had been invisible on all the mammograms, ultrasounds and CT scans I'd had to that point. Occult cells they're called. This is strongly influencing my decision to have a bi-lateral mastectomy. How can I ever trust a scan?

My tumour was initially thought to be 0.8cm but when removed was in fact twice that size.

The other day my surgeon said I had "quite dense" breast tissue. It's the first I've heard of it. This discussion is very interesting. We should absolutely be informed of our breast density and how it informs our treatment. It is insulting that we're not.

Sister

It does kind of make you wonder about these state of the art tools - none of them seem too accurate, do they?  While I never wanted to hear that I had breast cancer, I wonder where I would be if that mammographer had not been uncomfortable with the first scan and did another one?  What she saw was such a minute difference in cell alignment that it would have been easily overlooked...

steplightly

@gevans thankyou for posting this discussion and information. Dense breast is not a term I have heard from any of the team I have been diagnosed or cared for by however I have heard about it. My cancer was not detected on mammogram nor was it palpable. My mammogram picked up a cyst that was aspirated under ultrasound and then the "oh what's that" from the sonographer. It turned out to be a 1.1cm idc with some dcis around it and clear margins with no node involvement. I have been having discussions about follow-up scans and have made the choice to have ultrasounds only. The cyst was not near the cancer at all. I agree @sister that none of the tools seem to accurate but can appreciate they are trying to improve them all the time.  I will ask my surgeon at my next visit about dense breast. 

Jeanbean

Thanks Gevans, my husband had a discussion with a person at www.informd.org.au and it was she that referred us to this BCNA site. They have been very helpful and we keep them informed of how we are going. We have also been corresponding with Dr Nancy Cappello and I may have my story on her site soon. We know she was in Australia last year but didn't know she was returning this year. We will pencil in the 10 & 11 October in Melbourne for the Breast Density conference.

Afraser - thanks - we know it's complicated, we have read several position statements on reporting breast density as well as numerous papers. However, the potential for a difficult decision on the appropriate clinical pathway once one knows ones breasts are dense is irrelevant to my argument. My argument is that we have a right to know and a right to choose. 

In regards to the wording of the mammography report, our RANZCR should take a lead - but it doesn't even acknowledge our online queries (we will follow up). The American College of Radiologists recommends (mandates?) the following content. Seems like a good starting point for consideration to us. 

'WORDING THE REPORT

The current examination should be COMPARED TO PRIOR EXAMINATION(S) when appropriate. The
INDICATION FOR EXAMINATION, such as screening or diagnostic, should be stated. The report should
be organized with a brief description of the COMPOSITION of the breast and any pertinent FINDINGS,
followed by the ASSESSMENT and MANAGEMENT RECOMMENDATIONS. Any verbal discussions between the interpreting physician and the referring clinician or patient should be documented in
the original report or in an addendum to the report.

The report should be succinct, using terminology from the latest approved lexicon without embellishment. Definitions of lexicon terms for mammographic findings should not appear in the report
narrative. Following the impression section and the (concordant) management recommendation
section of the report, both the assessment category number and FDA-approved terminology for the
assessment category should be stated. Other aspects of the report should comply with the ACR
Practice Guideline for Communication: Diagnostic Radiology.' 

By comparison, the BreastScreen Australia reports are rather sparse.

Jeanbean

Hi again Gevans

The date of the Congress has shifted by one day (just in case you not aware). This is from their FB site.

11-13 October, 2018
Melbourne

The 2018 Melbourne International Breast Congress will be held jointly with the Australasian Society for Breast Disease (ASBD), 4th World Congress on Controversies in Breast Cancer (CoBrCa) and Breast Surgeons of Australia and New Zealand (BreastSurgANZ). This most important congress will take place in Melbourne, Australia, October 11-13, 2018. As the main congress in the field of breast diseases in the Asia-Pacific region in 2018, it is one that should not be missed.

wendy55

FINALLY, great to see some serious discussion about this controversial subject, I started having mammograms at age 40, 2 first cousins had both had breast cancer one diagnosed at 29 the other at 50, so did the right thing all though dr was reluctant, so took myself off to the then breast clinic at rah, this was 23 years ago and requested a mammogram, so fast forward to 2013, on two separate occasions I had been recalled and had to have a fna, fortunately came back ok, so in 2011 had mammogram, this was at the time that here in sa we were going from anologue to digital films, anyway in late 2012 was advised by letter that my recalled mammogram along with several thousand other women had been  looked at and I was in the clear, I have this in writing, 5 months later after receiving this letter I was diagnosed with stage 4, 3 tumours left breast and the cancer had taken a hike into my liver 6 tumours and my spine,of which it was classed as many, so I pose the question how long had the cancer been in my body, no one would give me an answer, at no time was I ever told I had dense breasts, so very pleased to hear that NOW something may be done, I had an independent radiologist look at my films and an independent oncologist, a. the radiologist said there was an abnormality. b. the oncologist said that eventually this will kill me,HOWEVER when the radiologist learned that I planned court action he did a complete 360 and said dont contact me again!!! so hard to fight doctors, I also had a 2nd independent radiologist look at my films, again it was said that I had an abnomaility that should be looked at, again another 360, would only give a verbal report not written, what can you do!!!
wendy55

Afraser

Dear Wendy55, that's a pretty horrific story! No wonder you support some action in this matter. I can't see any reason why women can't be told, after all we are encouraging women to have breast checks aren't we? To me that also means being able to know more about their own bodies, not just some pass or fail rating. And if mammograms aren't the best way of doing this then the sooner we talk and do something about it the better. 

Zoffiel

Screening is a nightmare. It took me 2 years and multiple scans for someone to decide the lump i was worried about was a lump. Because this not lump was very high on my chest rather than in my boob, that part of my body didn't fit in the machine. The lobular 55 mm carcinoma didn't show up on the ultrasounds or needle biopsy. I had get really agressive to  get it sugically removed. Bingo, it's cancer.
Fast forward 10 years and we do it all again--another two years of me yelping about a lump under my arm that was 'scar tissue'. Until the walnut sized lump started growing outwards through my skin. Cancer again. Everyone treated me like a neurotic fool because my cancer did not present like they were used to. Humph.

Romla

I too have dense breasts.What type of screening should women with dense breasts have to optimise cancer detection ? Also what strategies , if any , can women with dense breasts employ to reduce breast density?

onemargie

I had mammograms since turning 40 as I had lumpy cysty “dense boobs” and the year before I was diagnosed I had a mammogram and I had a cyst aspirated which came back normal evidence of cysts and a fibroadenonoma which I told was harmless. I was never told Denise breasts are an increased risk of breast cancer! If I was told thst I would of had them both taken off and a recon done straight away. So pissed off.

I have a 21 year old daughter and I was told she can wait until she is 40 to have mammograms as she is at increased risk but not high risk.  But bugger that. She does regular boob checks and I was going to encourage her to start much earlier than 40 for her mammograms/ultrasounds say around 30 but I will be asking her to start earlier than that now for sure in case hers are the same. Thanks so much for the update.  Margie xx

lrb_03

@onemargie, I thoughtI'd read somewhere that the recommendation was for screening to start 10 years younger than the youngest in the family to have breast cancer.

I, too have dense breasts. I unfortunately can't locate my first mammogram done 7 or 8 years prior to my diagnosis. It would be interesting to read it now, as it was done because of a 3 month episode of one sided breast pain, that actually stopped a few days beforehand. 

Fast forward to my diagnosis, and the report very clearly makes a statement about the breast density, and the impact it has on accuracy. I've only ever had diagnostic mammograms,  & always had ultrasounds at the same time. It is only in the last few years that the issue of breast density has become more publicly acknowledged,  I don't know how long it has actually been known. Changing technology means that imaging techniques are also changing rapidly.

I will confess here, that like many on this site, I am a nurse. I do have quite strong opinions about taking responsibility for our own health, and having a certain level of health literacy regarding our own conditions. For many years I have asked to at least see all results, if not asked for  copies, so that I could ask if I didn't understand  something. If we don't know  about something, how can we ask about it? 
I'm glad that breast density is becoming more acknowledged, but there's a long way to go

Romla

Been doing  a small bit of research - it seems aspirin may help reduce breast density 

Sister

I think it must be that we're all dense ( or in @onemargie's case, Denise).

I haven't had enough sleep, obviously.

gevans

hi jeanbean and others. The mammographic Density Conf precedes the ASBD and CoBrCa conference.
Why Study Mammographic Density? Conference: Melbourne, October 10-11th, 2018
I'm really hoping that women diagnosed after a clear mammogram can attend to have their voices heard. 
Thanks to all who have commented and shared their often terrible experiences. 

Jeanbean

Thanks gevans. I'd like to attend but don't fit into any of these attendance categories: Physicians, Scientists, Nurses, Students, Residents, Fellows, Allied Health Professionals, Consumer Advocates. They don't seem to have a category for 'concerned survivor of an epic failure/refusal by BreastScreen Australia to report dense breasts'.