For Those with Dense Breast Tissue

I am convinced no test is 100%... and this has led me to most likely have a PBMX... I still have time to decide.

Jbin... Yes, we can only do so much... and with a dliligent BS, we hope they do get it all...Even though a MX isn't medically necessary, it is psychologically necessary I believe.

Soccermom... I was again at my onc today and again he proposed a monitor and follow regime and I was totally honest and said that while not working or being active, I am consumed with cancer and thoughts of cancer and recurrance... and can't see myself having tests and biopsys from here on out... I said I am not an A cup looking to become a C cup... I am what I am and just want it removed and replaced with the like... I am a C/D cup with I think enough fat to have a flap surgery, and then I will look almost the same with a few scars... whatever.

I have dense breast tissue, and have always had mammograms that stated that, but was never told that I might need u/s.  I found a lump myself just 3 months after my last mammogram.  Ultrasound and biopsy Jan 27, 2011, confirmed ILC.  During a second opinion, was offered MRI of both breasts.  MRI showed another area of concern.  During US before 2nd biopsy, I showed tech how if I laid on my side the 1st tumor was really easy to find.  While looking at that, she discovered a 3rd area that hadn't been seen even on MRI.  All three were positive for ILC.  I am scheduled for a BMX on March 2nd.  I am glad that I got a second opinion, but very frustrated that Dr. in my home town had never even suggested that I needed an ultra sound for dense breasts.  I agree with other posts.  If you have Dense breast tissue,  demand an ultrasound, and an MRI.

Thanks, carpediem1965 for reposting the areyoudense.org link. The site is excellent!

Thanks again to all of you who share your stories. I've learned so much from you. Yesterday I went to the hospital and obtained all my past mammography and sonography reports, my recent US report, and ALL images, most recent one on disk (1997,1999, 2003, 2011). Every single report states, "The breast tissue is extremely dense." This has never been reported to me. As I stated in a recent post, I learned about my dense breast tissue over a week ago as the US tech was describing my breast to the student standing by. The most recent report also states, "Results and recommendations were immediately provided to the patient." Nothing was said about the dense breast tissue to me. I was told I have quite a few benign cysts and that I should get an MRI. I went home and did my own online research about what dense breast tissue means (that's how I came across this discussion board.) At my follow up visit with my family doc (which I called because I wanted to speak with her) the doc told me about the report saying I have benign cysts, everything is fine, follow up in a year with another mammogram. Nothing about dense breasts and nothing about an MRI. Of course, I questioned why the report didn't talk about the MRI, and I brought up the topic of dense breast tissue. My doc is following up on why the MRI wasn't included in the report. It wasn't until I shared your stories with my doctor, reminded her that my grandmother died from BC, and that the radiologist told me to get an MRI, that my doctor decided to make an appointment for me to see a breast specialist. I've got the first opening, April 4th. Right now I'm considering myself a lucky woman because I am seeing a breast specialist. You all are right . . . we must be proactive in order to battle breast cancer. If I hadn't spent the week doing my own research, I would have left my doctor's office saying, "OK, I'll get the mammorgram next year as the report states I should do." No woman should walk away without knowing whether or not her breasts are dense. I will work to get a bill passed in Virginia such as the one Gov. Rell passed in Conn. that requires physicans to inform their patients if they have dense breast tissue. My sincere thanks again to all of you!!! I will continue to follow your stories and share this discussion board with the women I know.

Thanks toni30! Will definitely do all that I can to try and make it happen!

Hey toni30,

 What do you mean?

I had a "Clean" mammogram in April of 2010- 9 months later I felt a lump...

I went to my OB/GYN and she ordered a mammogram and ultrsound. I went to the mammography center on 1/14/11 and after the tests were completed the Dr. said he saw an area of suspicion and I should "come back in 6 months for a biopsy" .... I told him I did no want to wait.  On 1/18/11 they did a biopsy and found a 10.7cm mass (a little over 4 inches!!)  I HAVE DENSE BREASTS... why didn't they explain the significance of this to me? I spoke to my oncologist and asked him if he thought this mass was there when I had a "clean" mammogram 9 months ago.... He thinks it's been there for 3 years. 

I requested a meeting with the Medical Director of the mammography center... I get to go through 20 weeks of chemo,hair loss,menopause, a mastectomy, radiation, recontruction & 5 years of Tamoxofin...  loss of income and the effect on my family. What are the consequences for them?  We must change the laws in this country!!

Watch the video- Dr Debra Rhodes from the Mayo Clinic as she discusses mammography and dense breasts.  http://www.youtube.com/watch?v=DqbM1ZrpTQg    Only 1 state (Connetticut) has a law to inform women about dense breasts. 

 If my cancer had been caught early, if the issue of breast density had been properly explained- perhaps my options would have been better. 

Oh My God CarolinaMom,

 I just now read your story. 10.7 cm and was missed! Told you only "suspicious" and to come back in six mos. Whhhuuut?? Even if "just suspicious" wasn't way off, that's not good. And Im not happy no one explained dense breasts to me either until I learned I had cancer. I didnt go back for a month after feeling the lump because I'd just had a mammogram and my boobs are always lumpy; I didn't want to be running back and forth every few weeks. Had I known mammograms miss it 50 percent of time in  dense breasts AND dense tissue is at greater risk for  cancer, I wouldn't have waited to go back. BTW, the second mammo, 3 days before my biopsy missed it too . It was picked up on an ultrasound. I had an enlarged lymph node on the first mammogram and noone told me. So with all that ranting and rambling, how are you? Is your prognosis looking pretty good? I hope so. All the best.

Rachel

FYI - dense breasted 43 year old here:

- film and digital mammogram - found the DCIS (in arm pit)

- US - found DCIS

- MRI - found DCIS, missed the two IDC tumors (2mm, 9mm)

- Pathology table - found it all!   

Rachel, you continue to say - in post after post after post - that you have "read" that digital mammograms are only 50% accurate on those with dense breasts.  You quote anecdotal information but you have yet to present any scientific / credible support for this statement.  When I first read your statement, I had no idea what the accuracy of digital mammograms was - so I did the checking myself.  What I found is that this "50% accuracy" number does not appear to be supported by any of the literature or studies that I can find.

The DMIST study that I quoted in my earlier post in this thread (and in other posts in which I have responded to you) is considered to be the definitive study on this issue. It shows that digital mammos are in fact significantly more effective on women under the age of 50 and women with dense breast tissue.  Overall accuracy level is rated at about 70%.  Here is another more detailed report on this study; here the details show that the accuracy level of digital mammograms for women with dense breast tissue was actually 78%:

Diagnostic Performance of Digital versus Film Mammography for Breast-Cancer Screening 

Johns Hopkins was a major participant in this study so I suspect that they data that they would provide about the accuracy of digital mammograms would be consistent with what I have quoted here.

I have posted this information before, and yet you continue to make the unsubstantiated and unsupported statement that digital mammos are only 50% accurate.  Why?  Have you read the studies and articles that I've provided links to? If you have other information that comes to a different conclusion (more than just what you've "read" or "heard"), I would appreciate if you would share it. I want the information that I pass on to other women here to be the most accurate and up-to-date possible and if you have better information than what I've been able to find, I'd really like to know.  You've mentioned in other posts that you do medical writing (for a living, I believe) and you have your own website that you often suggest that women here go visit; I believe that on that website you post information such as we are discussing here.  I will be honest in saying that I find that to be really concerning, given the quality of the information that I've seen in some of your posts on this and on various other issues (diet (soy, dairy sugar), lymphedema, etc.).

I'm sorry - I really don't mean to be impolite - but I'm getting tired of presenting the same scientifically supported data over and over and over again, in response to the same unsubstantiated or poorly supported information that you post over and over and over again.

Breast density is an important issue.  There are high risk women who have made the decision to have bilateral mastectomies simply because of their fear that if they get cancer, it won't be detected. They are making a huge decision that will affect them for the rest of their lives - and in many cases they are making this decision based on personal anecdotes, inaccurate information, someone's opinion (or fears) or what someone "read". When you consider the possible implications of what we say here, I think that all of us who post have an obligation to present the real facts and the most accurate information that we can find.

Back to the issue of breast density:  

Yes, it is very important that we educate women who come to this site about the risks associated with having dense breasts.  Too many of our doctors don't do their jobs and tell us these facts.

Yes, it is very important that we urge all women to find out from their doctors or radiologists what their breast density is (although most of the posts here and in other threads about breast density don't suggest that women to do this - which probably leads a lot of women to assume that they have dense breasts when perhaps they don't).

Yes, it is very important that those who have dense breasts understand that MRIs are the best screening tool for dense breasts.  

But let's not exaggerate the ineffectiveness of other screening methods just to make the point about MRIs seem stronger or the situation for those with dense breasts seem worse.  If we really are concerned about women who have dense breasts, we should be trying to present options for those who are not able to access MRIs.  That's what I've been trying to do, but I am continually being out-shouted by the fear-mongering. I find that to be sad and frustrating.

End of rant.  

Beesie: Thanks for the helpful research.  This is an important conversation.   I agree that women should not panic, so lots of accurate information is great.  However, because many women cannnot get their insurance co to pay for an MRI, even when the data would indicate it, I believe that we should also be taking action to get the laws changed.  States regulate insurance compnaies, and so, I would encourage women to talk to their elected officials about requiring insurance companies to pay for additional testing for women with dense breasts. 

Yes, Beesie, I'd seen the DMIS study; it was funded by the American College of Radiologists, whose members make tremendous revenue from digital mammography; some practitioners and scientists question whether there was politics involved there.  

Here's Deborah Rhodes, MD (Mayo Clinic) talking on the accuracy of digital mammography for dense breasts (citing a study finding DM is up to 60% accurate in detection in dense breasts). Dr. Rhodes goes on to discuss what she believes is  the politics behind what has been reported to the public. http://www.ted.com/talks/deborah_rhodes.html

From a Univ of N. Carolina study published in PubMed:

" No significant difference in accuracy in digital vs film mammography" (at time of study, this particular line offered the highest resolution available)  http://www.ncbi.nlm.nih.gov/pubmed/15288038

From USC:

"Mammography 40-60% accurate in dense breasts"

http://www.usc.edu/hsc/info/pr/hmm/05fall/nowhere.html The author does not specify digital, but my oncologist and breast surgeon say digital mammography has been standard in most imaging centers for years. Call it anecdotal, but both my doctors say DM just isn't good enough for dense breasts and said the 50-60 percent accuracy I'd read was right. They push for MRI over DM for their patients based on what they see day in and out. Between all the women I went through chemo with and all I've met on Facebook breast cancer support groups who, like myself got repeat false negatives with DM, I am genuinely concerned. You can agree or disagree, feel concerned or not, as you chose. Hey, a question for you ... I noticed in an earlier post you said that MRI's should be the standard for women with dense breasts; so I would think that would mean you acknowledge DM's are not very effective in these cases?

Sorry, I couldn't find what I originally read from the Professor at Johns Hopkins, but do recall she stated 50 percent detection accuracy in dense breasts; she was the one I was referencing in the earlier post who said trying to find a tumor in a woman with dense breasts is like trying to find a polar bear in a snowstorm.

Bessie... I have read through your posts on this thread and others, and have to agree with Rachel... I find your posts to be a bit hostile and self advocating... I think commenting on Rachel's posts is one thing, but being critical or demeaning  is quite another. Whether her info is accurate or not does not give anyone the right to preach.

Rachel, I am sorry that my last post was hostile - and I agree that it was - but in my defense, I've replied to several of your posts before, as have other women here who I highly respect, either asking for more information or providing information that differs from what you said. Almost without exception, rather than engage in discussion, you simply ignore the feedback and go on to repeat whatever it was that you'd said earlier. My last post reflected the frustration that has built up over several of these encounters, and I apologize for that.

I agree that this is a place where people come for support, and while I understand that I have not been supportive to you, I know that my posts are appreciated by at least some of the women here, both for the support that I provide and for the information that I share. Where I have an unfortunate tendancy to butt heads is when it comes to the accuracy of information provided. I believe that it's important to provide the best and most accurate information possible to those who are new and scared and come here with questions and decisions to make. I would feel absolutely horrible if I scared someone with information that turned out to be inaccurate, or if misinformation I presented led someone to a decision that she would not have made if she had accurate information. So I spend a tremendous amount of time researching before I present any data. I greatly appreciate others who do the same; I gladly steal sources from them and I'm happy to be corrected if someone uncovers something new that differs from what I said.

I really do appreciate learning something new. So thank you very much for the video link of Dr. Rhodes. I had heard of MBI but didn't know much about it. It's very interesting. Let's hope MBI lives up to it's potential and if so, that it becomes easily accessible for all women.

What I found interesting is that Dr. Rhodes, in concluding her presentation, offered up many of the same suggestions that I've been making here. First, KNOW YOUR DENSITY! That's one of the points that I've been trying to drill home. Next, if you notice a change in your breasts, INSIST ON OTHER FORMS OF IMAGING (in addition to mammograms). I agree that MRIs are the best choice but if you can't get an MRI, get an ultrasound. Lastly, GET YOUR ANNUAL MAMMOGRAM. Despite all her concerns about mammos, Dr. Rhodes acknowledged that for most women, this remains the first line of defense.

Dr. Rhodes also explained that for women under the age of 50 who have dense breasts, digital mammos are significantly better than film mammos. The numbers she stated were that film mammos are 40% accurate while digital mammos are 60% accurate. While the numbers differ, this confirms the key point that I've been challenging you on, which is that digital mammos are better than film mammos and are more than 50% accurate. Therefore if a woman is unable to get an MRI, she should insist on getting a digital mammo.

As for the other two articles that you provided links to, the first talks only to overall results. Every study I've seen is consistent in saying that digital mammos are no better than film mammos for the general population of women. But every study has also confirmed that for the subset of women who have dense breasts, digital mammos are better. In a discussion thread about breast density, presenting overall results without focusing on those with dense breasts isn't particularly meaningful and could be misleading. The second article talks about mammos in general, not digital mammos, although if the range of effectiveness for mammos is 40% - 60%, perhaps they are including both film at 40% and digital at 60%. Note that this article also points out that adding ultrasounds to the screening program is one way to get around the lower accuracy levels of mammos for those with dense breast tissue - which is exactly the point that I've been trying to get across.

Lastly, to your question "I noticed in an earlier post you said that MRI's should be the standard for women with dense breasts; so I would think that would mean you acknowledge DM's are not very effective in these cases?", No, that is not what I am saying. Of course MRIs are best - that's not in dispute. My point is that not every woman is able to get access to an MRI. So what I've been trying to do is present an alternative that might not be as good as an MRI but is better than simply accepting the low accuracy level of film mammos. In other words, for those who can't get MRIs, insist on a digital mammo, ask for an ultrasound as well, and get your screening done at a facility where the radiologist is experienced and an expert at reading dense breast films. That combination will significantly improve the level of accuracy vs. a standard film mammo.

I think that presenting a reasonable alternative for women with dense breast tissue who are unable to get MRIs is pretty supportive - and a lot more helpful than just saying that mammos are no good and digital mammos are no better and MRIs are the only thing that's effective.  I apologize if the way that I've been trying to get this message across hasn't been the most polite, but unfortunately sometimes you have to shake things up a bit to be heard.