Mammographic/breast density

gevans

There are a couple of shocking stories on this website describing diagnoses of advanced breast cancers despite the women receiving repeat and recent  'normal' mammogram reports. This is likely due to those women having mammographic/breast density. It refers to the amount of white and bright regions seen on a mammogram. Women
with dense breast are not only at a greater risk of having breast cancer, they
are less likely to have that cancer detected by mammogram.
WA is the only State in Australia where density is reported on a mammogram.
Many people think that women should not be told they have dense breasts unless evidence -based advice can be given on how to manage the density.  I think women have the right to know their density so that they can take steps to be closely monitored and to reduce other breast cancer risk factors. The information belongs to the woman and in my opinion should be given to the woman.
 What can you do? You can ask your referring doctor or screening provider to let you know if you have increased breast density for your age and whether you need extra screening measures e.g. ultrasound or MRI. You can learn from websites such as http://www.informd.org.au and http://www.areyoudense.org
For those already diagnosed with breast cancer it is very important for your sisters and daughters to be aware of breast density because there is evidence of a genetic link.

Brisbane women: A free public forum on mammographic density will be held on 
 Wednesday 22nd March 2017
6pm - 7:30pm
 Institute of Health and Biomedical Innovation
60 Musk Ave, Kelvin Grove, Brisbane

It is free but please register at https://qutmammographicpublicforum.eventbrite.com.au.

So what do you think? 

Unicornkisses

I am one of those woman.
 No one ever told me I had dense breast tissue until the final ultrasound mapping my cancer, where the technician commented how hard it was to see through my breast tissue. And even that mammogram and ultrasound showed a 3.2cm IDC as 1.9cm and did not show up the second 2.2cm IDC or the DCIS in that same breast. 
And I had religiously had mammograms and ultrasounds for 10 years prior, the one before diagnosis was only 17 months prior.
Had I known the significance of the dense tissue I would have approached my own checking differently and learnt more about my individual breast tissue.

A different education approach needs to be taken. 

Harlee

Yup!
I also had mammograms for 12 years from the age of 40. They were all fine apparently. The last one was only a few months before I found my tumour myself. My own GP couldn't feel anything but trusted my judgement and so I had my first breast ultrasound and BINGO - there it was.
Even then the first I knew about my dense breast tissue was when the doctor who did my core biopsy commented on how dense they were. He told me how lucky I was that I had felt the tumour as nothing was visible in the mammograms. 
I am truly lucky as I was only Stage 1.
But it could have been very different - the fact that I had a "clear" mammogram only a few months earlier meant that I initially ignored what I was feeling. When my doctor couldn't feel it I felt like an idiot and was about to apologise for wasting her time. 
I wish I had known that I had dense breasts and that perhaps I should have been having ultrasounds as well. I wish I had known that due to the increased density the mammograms were not as reliable. While I was only Stage 1 I still had chemotherapy which may not have been necessary had the mammogram I had earlier that year or 2 years prior detected the cancer earlier.  
I absolutely believe that women should be informed about their breast density and what that means.  

primek

I had a clear mammogram 5 weeks before finding a palpable lump. I'd been having mammograms for 10 years. Not once. ..even when recalled for a cyst did they ever tell me I had dense breasts and recomnend additional testing. They did tell my GP though. I know as he handed over my paper file (after I changed GPs) and there it was on mammogram reports to him. Did he tell me? No. Did they recommend additional ultrasounds, MRIs?..no. Did they suggest a referral to a breast surgeon for risk review?...no. This is despite my half sister dying of breast cancer and her daughter being diagnosed. This is despite 3 Aunts and 2 cousins all dying of either breast or ovarian cancer. 

Am I annoyed...you betcha. But hey ...genetic mapping is done and Oh yeah...they are serious when screening my other sisters now. 

Sorry rant over...but it's time we as women and patients are told all the facts and risks and what we can do to reduce it.

Kath x

Afraser

That's a perfectly good reason for a rant!! Just for info and according to my breast surgeon, your breasts get more transparent with age. My remaining one is now in a particularly fine stage of transparency, which is somewhat reassuring! No damn good at all, if you are 40 with dense breasts however.

Zoffiel

"Lumpier than a kapok mattress" direct quote from the senior technician who still missed a tumour the size of my thumb during a breast ultrasound. Phhffft.

gevans

Keep those horror stories and rants coming please. They add to my 'mission' of bringing this issue to the priority list of those who should be acting to change the situation that persists now. i.e.that women are not given important information that belongs to them.

primek

Hense why both breasts were removed at my surgeons suggestion. If you couldn't see a palpable lump...then how the hell can you screen. So glad it's gone. My Aunt survived breast cancer, ovarian cancer and then only to die from a new primary breast cancer in the other breast. I wasn't chancing it. 

Glemmis

My tumour wasn't picked up on mammogram, only that my breast specialist had done his own ultrasound earlier & said there was a thickening so mammogram & formal ultrasound needed. Radiologist came in to do biopsy & said you don't have cancer but Professor wants biopsy, it is up to you, glad I did. It was only when I picked up my mammograms after chemo finished to take them to radiology I learnt tumour had been hiding behind dense breast tissue & I was never told! 

Jeanbean

I felt my tumour whilst watching tele last October. Less than 5 months earlier I received a report from BreastScreen that no cancer detected, yet my surgeon later said that my Stage 2a, 3 cm tumour must have been there for at least three years - which means it must have been missed on at least two mammograms  (2015 and 2017). After the diagnostic X-rays I was told I had dense breasts and therefore the cancer was not detected. I'm 67 and have had nine screening mammograms since turning 50. After I was diagnosed BreastScreen looked at my last three mammograms and told me that my breast density was 50 to 75% in all three. In other words, there was very little chance that a cancer would have ever been detected and so I was wasting my time at BreastScreen. Had I been told about breast density, and that I had dense breasts, I would certainly have funded an ultrasound and my cancer would have been detected and treated years earlier. Incidentally, I had a lumpectomy and eleven lymph nodes removed. Have just completed chemo and started radiation therapy this week. 

It is a violation of my human rights for the government to know that I have dense breasts and not tell me. My husband has been researching the BreastScreen Breast Density and Screening Position Statement and its reference material. The Position Statement indicates that it is their policy to not advise women of breast density. Input to their argument is only from clinicians - who are concerned mainly about inconsistencies in breast density reporting and the possible psychological effects of false positive reports. But what about the effects on us of our false negative reports? These are life threatening. There is no consideration of a woman's right to know or a woman's right to be involved in decisions on her own breast examinations. The Position Statement is currently being reviewed by the Dept of Health Standing Committee on Breast Density, due to report this year. 

We need to get this position changed so that women in future are not victims of this short-sighted and deplorable policy. Would clinicians withhold information from a man about his health? I think not. So why withhold information from a woman. Note that on the website https://www.areyoudense.org there are 61 stories of women with dense breasts who did not have their cancers detected by mammograms. Eight of these have already died of their cancers. However these remarkable women have lobbied their politicians and have been instrumental in getting 32 USA states passing legislation for the mandatory reporting of breast density. There are more states on the way. Australia is lagging behind - the Standing Committee has been sitting on its hands. We are overdue for a change. The NSW Health Care Complaints Commissioner advocated breast density reporting on ABC radio in 2003. Fifteen years later and nothing has changed.

Does anyone else feel as I do?

Afraser

I think it must be particularly hard to know there was something you might possibly have done to aid early detection and didn't. It is impossibly hard when it is something you had no knowledge of or any means of having knowledge. So yes, I think this is something that @BCNA might take up. It's an education program as much as anything else. Just as women are advised to screen their breasts without scaring everyone, add knowing your breast density to the report. 

gevans

Mammographic (breast) density subject is definitely hotting up in Australia. Many of us agree that women should be informed of their density particularly those with moderate to high density. Apart from masking cancers, density is an independent risk factor for developing breast cancer. Many do not realise this. It  is important to consider this risk factor with other risk factors a woman might have, such as family history etc.
WA BreastScreen reports density and currently there is 'research' assessing how women have responded to the information. Another small study from USA has shown that some woman misinterpreted the information given. This demonstrates that women like Afraser, Jeanbean and those who have contributed to this post, would be very helpful in helping to comment on the language used in reports. 
My feeling is that health information belong to the individual. Some clinicians feel that because there are no clear recommendations for management of density that women shouldn't be informed!! And others have said that the system couldn't cope with more people requesting ultrasounds/MRIs which would be out-of pocket costs for women. So as you can imagine we've had some heated discussions. Nancy Cappello (https://www.areyoudense.org) is coming to Australia later this year. Also in Melbourne on 10th and 11th October there is a conference (Why Study Mammographic Density?) which might be of interest to you.

BCNA is now becoming more involved with breast density issues and we should hear more from BCNA soon.

In the meantime you might like to look at this website:www.informd.org.au

Afraser

It's complicated. Mammograms have also been criticised for picking up precancerous cells which may never develop and "causing" unnecessary lumpectomies. Many people would feel concerned about being told they have something that may become cancerous but best to just wait and see! Which may be the advice most appropriate for the circumstances but hard for the person concerned. Damned if you do and damned if you don't. 

I sat in recently on a forum to test run the language and instructions for a DCIS early detection trial. Language is all!! Six of us made a lot of changes to the clinicians' draft. All praise to the organisation (a UK/Australia collaboration) for taking the extra step about clarity and interpretation. 

Sister

Adding my bit...I had dense breasts pre-kids, gradually less dense as time goes on.  My guess is that at least one of my girls, if not both, are likely to be the same.  And I hate it when I am not deemed fit to view my own medical information!

In an aside about mammograms... My ILC was picked up by a screening mammogram in December but the surgeon was amazed that it had been seen - thought to be 2.5cm but was 4.5cm with no clear margins and already into the nodes.  Interestingly, it was very hard to pick on the CT scans as well.  Clearer on the ultrasound.

Romla

My breast surgeon was also surprised my ILC was picked on a screening mammogram as my breasts are dense and was deep down near my breast bone above my heart .Luckily for me I had the top mammographer (?) in the state  - wonder where I would be if I didn’t.

kezmusc

I had a mammogram in 2012 for a small lump that I had felt in the offending breast.  My GP phoned with the results and said nothing to worry about, its' just dense breast tissue. Perfectly normal for your age (41).  Fast forward to 2016 I felt a random weird lump under my arm while laying on the couch watching tele.  It was tricky to feel unless I was lying in a certain position. Mammogram and ultra sound on the breasts came back all clear.  FNA on nodes came back "highly suspicious for metastatic breast cancer" 

2 more mammograms and another ultrasound failed to find the breast lesion. 

 MRI found it no problems.  19mm in breast, 25mm lesion in one node and 5/24 nodes positive.  Hmmmmm....stinky thing was there for four yrs. Lucky it wasn't any longer.