Beware Overreaching Government Efforts to Detect Breast Cancer

So when govts around the world dont spend money on screening for BC they get criticized and told they dont care about saving women's lives. When they do, they get criticized because they dont have all the answers. If the author of this had breasts with dense tissue, I think this article would have been written differently.

Is there really anything wrong with advising women they have dense breasts and that mammo's may not pick up potential BC? Not in my mind. Id rather see 1000 women with dense breasts screened with mammo, us and Mri so that 1 women is dx'd early enough to hopefully keep her from stage iv. Some BC is still missed on mammos as some women here can attest to, and Im sure those same women (presumably with dense breasts) would have pushed for mri or further investigations if told that there was a strong chance the mammo wasnt effective for them. Mammo and US DO work for the majority of us and if a % of the female population need to go on and have mri as a further investigative tool, then I dont mind my tax dollars paying for that. Would be a lot cheaper than the several hundred thousand dollars for surgery, hospital stay, chemo and rads.

I realise this article is the authors whinge about a NY law, but to me he's taking a stance that is dangerous .If he had dense breasts I doubt this article would have been written.

My tumor was found on mammagram but it was only after I picked up all my records (first mammagram about 20 years ago) that I learned I had "dense breasts". I was picking up the records to use in making surgery decisions. I had a number of "suspicious" tests that needed follow up over the years (ultrasound, cysts drained, etc.). If I'd known about the dense breasts and the problems in detecting cancer, would I have done anything different? I don't know but I wish the choice had been mine. The Forbes article sounds like insurance company "spin" to me. Sifting and sorting the all the information is a job for me and my doctor. Again, I didn't have the information.

Interesting article.  While the subject is breast density, I see a much broader issue. To me, the issue is 'sound bite' communications, or 'how to take a complex medical issue and present it so simplistically that the wrong message gets out'.  In the breast cancer world, we are seeing this more and more often. 

"DCIS is over-diagnosed and is being over-treated".  The message that many women get from this is that if their mammo shows something that might be DCIS, it's better to ignore it rather than get into the loop of over-diagnosis and over-treatment.  And if you do have a biopsy and are found to have DCIS, and your doctor recommends surgery, ignore him. 

Well, no, that's not the right message. The message is that all DCIS is not alike. Some cases of DCIS are serious - they may actually already be hiding invasive cancer - or they may evolve to become invasive within a relatively short window. But other cases of DCIS are low risk and require minimal treatment. What's appropriate to treat one case of DCIS may be over-treatment or under-treatment in another case.  So every case needs to be dealt with individually... and no woman should reach any conclusions about her treatment plan until she understands the specifics of her diagnosis. 

"Women between the ages of 40 and 50 don't benefit from mammograms." The message that many women get from this is that they don't need to have any breast cancer screenings until they are 50.  

Well, no, that's not the right message. The message is that not all women between ages 40 and 50 benefit from mammograms so individual screening requirements should be determined by the patient and her doctor.  There's also the issue of how the "benefits of mammo screening" are assessed. The studies that led to these recommendations looked at only one end point (related to the benefits of screening) - mortality. I believe that there are other important benefits to early detection, such as reducing the number and type of treatments required; not needing chemo is a big thing.  So 'no screening' is not the answer. Assessing individual risks and needs and determining the appropriate screening methods and schedule for each woman is the answer.  And finding better screening tools is another part of the answer.

"Women with dense breasts are 6 times more likely to get BC.  You need to know your breast density so that you know your risk".  The message that many women get from this is that if they have "dense breasts", they are very high risk to get breast cancer.

Well, no, that's not the right message.  The message is that women who have breast density that exceeds the norm for their age may be at higher risk; more specifically, women who are post-menopausal and who still have extremely dense breasts are at higher risk.  

In the age of Twitter, we seem to believe that 140 characters are all that's necessary to communicate. In truth, we are dealing here with complex medical issues and the media - and the medical community - should have the sense of responsiblity to explain things fully and well.   But they don't.

My concern with the breast density issue is that the warning, and legislation, is out there with no proper explanation. Young women have dense breasts. Almost always. But young women are low risk. Their high breast density is a normal condition. Yet we see so many young women who come to this board scared out of their wits because they've been told that they have dense breasts and then they read - on this discussion board or somewhere on the internet - that dense breasts makes them 6 times more likely to get BC.  So they are petrified and they become insistent that they need to have MRIs (or prophylactic mastectomies). Their fear is reinforced by what they read in all those 'sound bite' articles on the internet, and by women here who say that their BC was missed because they had dense breasts.  A simple anecdote, even when completely true, can be a dangerous thing.

So while I could quibble with the specifics of the Forbes article, I understand the issue. It's the communication of a medical issue with no explanation of what it means or what to do about it. I don't agree with the conclusion of the article, however.  No communication is not the solution to bad communication.  I absolutely believe that it's important that women know their breast density, but I think that when women are told their breast density, it has to be more than two words ("heterogenously dense") on a page.  Every woman should get a handout that explains exactly under having dense breasts means... what are the different levels of density, how common is each level of density by age, what does it mean if you have dense breasts at a young age, what does it mean if you have dense breasts at an older age, what screening is recommended, by age group, for those who have dense breasts.  

I wish breast cancer could be understood in simple sound bites, but that's just not the way it is.   

  

voraciousreader and Beesie - Thank you, as always, for your thoughtful and insightful comments. You always give me food for thought and I've ordered Dr. Topal's book which sounds very interesting. I agree with you that we all need to carefully examine the actual numbers and figures from research studies. I have found that I am much more skeptical of news studies about medical findings and often try to ascertain who might be behind the "spin" of a particular article. The increasingly common practice of press releases being incorporated fully or partially into so-called news stories is of particular concern. I find this especially true when the article concerns proposed public policy or regulations. Recently, I finished the book "Deadly Spin" by Wendell Potter. It is about health care reform, not breast cancer, but provides a candid view of the role of industry in influencing so-called "grass roots" and media efforts to influence policy and legislative decisions. I think it complicates the work that patients and doctors have to do in figuring out the best course of action.

The  Associated Press's version of the new has a quote from Dr. Brawley:

"New York's new law, scheduled to take effect at year's end, sidestepped explicit next-test advice by requiring the notification to say: "Use this information to talk to your doctor about your own risks for breast cancer. At that time, ask your doctor if more screening tests might be useful, based on your risk."

Another big concern: There's no standard way to measure breast density - it's a judgment call that can vary from radiologist to radiologist, and from one year's mammogram to the next, said Dr. Otis Brawley of the American Cancer Society.

Radiologists divide density levels into four categories. According to the American College of Radiology, about 10 percent of women have almost completely fatty breasts. Another 10 percent have extremely dense breasts, the level that Kerlikowske said is linked to a higher risk of developing cancer. The rest are in between, with about 40 percent having scattered areas of density and 40 percent having fairly widespread density, categories especially difficult to classify.

"We're making policy in a gray area where the experts and doctors don't know what it means," said a frustrated Brawley.

To help women make sense of the debate, the American College of Radiology this month developed a brochure for mammography centers to distribute.

Furthermore it was reported:

"Monday, scientists reported a bit of good news about yet another question: Do denser breasts also signal a worse chance of survival? A National Cancer Institute study tracked more than 9,000 breast cancer patients and concluded those with very dense breasts were no more likely to die than similar patients whose breasts weren't as dense."

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Furthermore, the Institute of Medicine came out with a report that said $765 billion of the $2.5 trillion spent on health care in 2009 was on WASTE.  Waste was classified as:

"The "waste" estimate from the Institute of Medicine (IOM) - an arm of the
National Academy of Sciences - came in a report ("Best Care at Lower Cost") that
broke down the $765 billion figure as follows:

● Unneeded services (tests, procedures): $210 billion.

● Excess administrative costs: $190 billion.

● Mistakes and delivery inefficiencies (preventable complications, fragmented
care): $130 billion.

● Artificially high prices: $105 billion.

● Fraud: $75 billion.

● Missed prevention opportunities: $55 billion."

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If we took a fraction of the money spent on unneccesary tests and put it towards RESEARCH to find better means of detecting breast cancer AND put some more of the money towards finding a cure....I know....wishful thinking!

When I see articles like this, I often think of the late U.S. Senator Daniel Patrick Moynihan.  Two of his quotes come to mind when I ponder how government gets involved in issues that they think they are helping but might be doing unnecessary harm:

"If you don't have 30 years to devote to social policy, don't  get involved."

AND,

"Somehow liberals have been unable to acquire from life what  conservatives seem to be endowed with at birth: namely, a healthy skepticism of  the powers of government agencies to do good."

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However, sometimes there are great visionaries in government who do propel us in extraordinary directions.  This week was the 50th anniversary of President Kennedy's breathtaking speech of challenging our country to land a person on the moon and returning them safely before the decade was over.  Everyone knows THAT outcome!  Reading Dr. Topol's book, I know that we, as a nation, have the capability to find better ways to spare lives.  If we continue to position the issue as a political one, then it's my humble opinion that it will take longer to succeed.  The argument should be framed around the fact that current testing is inadequate for many women.  And if the government wants to get involved, then they should find ways of eliminating waste and funnel more money into research.

Dr. Topol also discusses THAT in his book as well.  Early in the book he talks about how our government believes we will save so much money by going paperless.  Instead, he believes the most amount of money that can be saved will be achieved by coming up with screening tools and tests that work better than what we have today.

http://jnci.oxfordjournals.org/content/104/16/1218.abstract

Relationship Between Mammographic Density and Breast Cancer Death in the Breast Cancer Surveillance Consortium

This is almost funny cuz  a little over 15 yrs ago, all thewomen in our family had mamo wh dense breasts and called back for more tests.I asked my Dr. why do certain women take a mammo when they're usless and as he out it we are made to thru ins. companies. They couldn't go straight to the test they thouht would e more usefull. Now remember I know not one thin about all these thins, but even that I figured out. So we were always dictated to wha tests would be taken

Beesie...Dr. Brawley discusses the issue of communication in his book as well. He always believed that if you gave patients all the information, and I mean all of it, statistics, ethics, economics, and quality of life, patients and/ or their families would come to the so called "right" decision. However, he describes two situations that despite being given the best communication, in his humble opinion, the wrong decisions were made. In a perfect world, doctors and patients work together to come up with an individualized plan. Unfortunately, as he so eloquently points out in his book, more often than not, that isn't the case.



You are correct Beesie. One would hope that patients are receiving and comprehending the information and making informed decisions with their doctors. Unfortunately, I wholeheartedly agree with you that somewhere along the way there's something missing and patients are NOT getting the complete picture despite having information.



Again, articles like this one, usually are more inflammatory than helpful. But at least we've started an articulation.

Beesie, I am talking about what the article says, not how people intepret information given out by clinicians. BTW, I do read the posts you mention. What is needed is better clinician education in this matter - not only physicians but also nurses, NPs and techs need to be told to differentiate between what a real biological risk is and what the benefit of a test is.

IMO, this should serve to move the conversation towards the topic of how mammograms do not serve a useful purposes as primary modes of screening - and the issue of dense breasts is only one of many.

Ultrasounds and MRIs are not poerfect, but they are generally better than mammos.

I had my 1st mamogram at 30 & my report said mamograms aren't very good at finding cancer in women like me. It said I had "severe fibrocystic disease". Recommended that I get another one in a year. That's how all my reports read until they switched terminology & no longer used "fibrocystic disease" & started referring to me as very dense. Reports still read that mamograms weren't effective for women like me. My cancer was detected at 52 & mamograms missed both of them. Do I feel like a chump? No clue why, no one thought to even attempt to get an ultrasound on me. I was diagnosed 1 1/2 yrs ago & ultrasounds weren't unheard of at the time.  

I had about 18 mamograms, worthless ones, in 22 years. I skipped some. We don't have good screening methods. The legislation doesn't bother me. I might have refused to get another mamogram if I had known there were other options that might have illuminated tumors better. To continually subject someone to an uncomfortable procedure, that the radiologist says won't tell them a damn thing because the breasts are too dense is just wrong.

I did read most of Eric Topol's book when it first came out(the library wanted it back). I also read some of Otis Brawley's book. Need to do some more reading. Short on time these days.