Thursday, November 22, 2012

Awakening to the Consequences of Breast Cancer Over-Screening & Over-Diagnosis: Prominent Study

This blog entry contains personal editorial opinions and is not intended as medical advice.  Readers are encouraged to do their own homework and seek advice from sources they deem appropriate.

How many of you know 3 women who have been diagnosed at some point with breast cancer?  Perhaps one of these women is you.

Do you know anyone diagnosed with early stage breast cancer who suffered or even died from complications resulting from treatment? 

What if almost 1 out of the 3 women you know may have been the subject of inappropriately aggressive screening, never requiring any diagnosis or treatment at all?

More troubling yet, what if the screening itself did little to prevent the number of women overall dying from breast cancer?

It's Thanksgiving, and although I really didn't expect to be blogging about breast cancer tonight, I couldn't help but be thankful for a stunning article on breast cancer featured on the front page of my local newspaper, revealing concrete facts about a tragic situation many awakening women like me have suspected for quite some time.

As stated in the Oregonian today: "In the last 30 years, more than a million women have been diagnosed with breast cancer when they didn't have it or had a low-level, non-threatening form, according to a new study" from a respected oncologist and medical school professor.

The comprehensive, long-term study of U.S. women also concludes that early screening by mammograms has had only "marginal" impacts on women dying from breast cancer, precisely what widespread early screenings are actually supposed to prevent.

Here is a direct quote from the study conclusions in The New England Journal of Medicine itself:

"Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer. Although it is not certain which women have been affected, the imbalance suggests that there is substantial overdiagnosis, accounting for nearly a third of all newly diagnosed breast cancers, and that screening is having, at best, only a small effect on the rate of death from breast cancer."

An earlier 2009 study in the British Journal of Medicine had similar conclusions about overly aggressive screening and diagnosis, its confirmation in my opinion a beautiful demonstration of the scientific method at work.  Also in 2009, what one of the panelists later said was "aimed at reducing the potential harm from overscreening", the independent U.S. Preventive Services Task Force panel appointed by the Department of Health and Human Services questioned the widespread use of mammograms before the age of 50.

Yet still, many refuse to listen, refuse to even reflect upon the possibility that women are being over-screeened, and it is absolutely astonishing how few mainstream news organizations are choosing to highlight this latest study, one that significantly impacts the choices and lives of women worldwide.  Women continue to be confused by conflicting recommendations from enthusiastic cancer charities supporting mammography, as well as doctors from the American Medical Association, whose careers depend upon treating these cancers.

As much as a growing number of women understandably celebrate being breast cancer "survivors", sadly the label itself has been rendered irrelevant in almost a third of these cases.  What almost 1 in 3 of these women actually "survived" was the treatment of breast cancer, based on an overly aggressive diagnosis they actually didn't need to receive at all.  How could their lives have been impacted if they could go back to that time before they knew, before their families knew, before their lives were turned upside down?  And what about those woman with early diagnoses who died from complications from the treatment?  The latest study says nothing about their untold numbers.

Nothing can be done now about the past, but what we can do is let future women know they actually have choices based on what more and more studies are revealing, despite the controversy.  These conclusions may be a bitter pill for many brave "survivors" to swallow, but what it really contains is hope, hope that will significantly reduce needless suffering for many women in the hands of an industry with profits fueled more by fear than facts.

As much as we would like to be handed clear, safe, unambiguous medical advice regarding the decisions we are called to make, unfortunately it's not that simple.

The studies show there are very real risks to over-screening, just as there are risks to being one of those unscreened women unfortunate enough to have a form of cancer that actually needs to be treated.  But the latest statistics tell us the screening itself does little to help, no matter what enthusiastic, well-meaning mammogram cheerleaders have told us in the past. And it's not necessarily safer to go for screening "just in case", a common misconception, particularly if you are one of those women exposed to the risks of over-treatment as a result.

And though it is a shocking thing to ponder, we must also be aware that the cancer screening and treatment industry brings in billions of dollars every year, and as much as we would like to believe that the motivations of the industry are lily white and pure, free from any profit motive whatsoever, the more wise and realistic among us will begin to realize just how unlikely that scenario actually is. Note that some cancer survivors have even recently surfaced and criticized corporate profit motivations behind wildly popular Pink Ribbon events - see the trailer for the 2012 documentary Pink Ribbons Inc. for that alternative point of view.

I took responsibility for my own choices long ago.  Due to being over-screened, over-radiated and over-stressed by diagnostic mammograms in the past (the ones you get when you are called back after a screening), I don't get mammograms anymore and haven't for several years.  I have encountered a number of other women quietly making the same choice despite the popular opinions of many of their well-meaning peers.  If I ever felt I needed something to be checked out, I would choose thermography and/or ultrasound instead.  I would choose alternative treatments too.

Few of us choose take a full body scan to go hunting around for other types of cancers, and I quite honestly have for years viewed mammography quite the same way. (And don't get me started about the choices I will some day be called to make about colonoscopy, a test that is NOT risk-free, a test I will some day consciously choose to skip.)  These are my choices as an empowered individual.  I see the logic and research behind my own choices as minimizing my overall risks, not the other way around. You are free to conclude and choose otherwise.

I personally have someone close to me who was diagnosed with breast cancer many years ago and chose not to do chemo for a rather advanced case that wasn't even seen in a mammogram at the time (albeit the technology was more limited back then).  She was aggressively warned (even bullied) by doctors who said she would die because of her courageous choice.  She survived many years and is still with us now, healthy and cancer-free, her life a testament to the choice doctors tried to take away.

I know someone else who spontaneously recovered from another form of late-stage cancer after being told by the doctors she had no choices left at all.   She too has been cancer-free for several years.

These are stories of survivors, but not the stories you usually hear.  These are stories of empowered, courageous women who granted themselves the power to Choose.  Often women are told that the "brave" thing is to do what the doctor says, often coached by other treatment survivors who have made that same choice, but no matter what a person chooses, the brave thing is to be empowered enough to make your own choice, to realize that you do indeed have a choice to do your own homework, no matter what your final decision happens to be.

I  know someone who almost died from optional chemo after being diagnosed with early stage breast cancer, thinking she was taking a cautious, conservative route for a rather minor diagnosis.  She was one of the healthiest, fittest women I knew at the time.  She made her choice, one she thought was the safest thing to do, yet within a very short time, it almost took her life.

Yes, of course there are women who have done everything they were told by the doctors and survived, women who credit the medical profession with their survival.  I do know women like that too, and some of them no doubt were indeed saved, particularly those diagnosed in later stages.  As for the others, how many of them needed to be screened, diagnosed and treated at all?  I will never know.  Nor will they.  And the latest study backs that up.

Not everyone survives alternative approaches.  But not everyone survives what the doctors and pharmaceutical companies tell you either.  Doctors are not gods, nor are they anywhere close to perfect.  Sometimes they give you good advice.  Sometimes they don't.  And often they make mistakes.  Therein resides the ambiguity and responsibility of personal choice.

It's time for the women who have had the courage to explore alternative choices to speak.  We can be the voices for the unknown number of silenced women who have suffered and died needlessly from over-screening and subsequent over-treatment complications, those unnecessarily taken from their families far too soon, women who actually had choices they may never have been led to contemplate at all.

Note: To listen to my 11/23/2012 Blog Talk Radio show on this topic, visit: Women Awakening to Empowerment of Informed Consent

All of the images in this blog post originated from Wikimedia Commons and are in the Public Domain.




6 comments:

  1. This comment has been removed by the author.

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  2. Some more interesting articles on the latest breast cancer study are showing up now in mainstream news sources.

    There is a discussion in this article from The New York Daily News where a mammogram proponent still recommends getting the screening despite the overdiagnoses, comparing mammograms to holding catastrophic insurance, just in case. The problem I have with this theory is that purchasing catastrophic insurance can't take your life or your health when you don't actually need it - purchasing catastrophic insurance carries little to no risk (except to your pocketbook), where as being unnecessarily treated for breast cancer in the worst case scenarios can have catastrophic effects.

    Another article in USA Today explores what is now an active debate over how to respond to this new study. The problem I have with much of what is being said is how unnecessary treatment is being discussed as if it is really more of a major inconvenience than a serious threat to your health. If you are a woman who suffers very serious consequences from over-screening, and you were not informed of the risks ahead of time, this is a travesty.

    Every woman has the right to decide for herself without being subjected to undue pressure by mammogram proponents who often belittle the risks. Women who question mammograms (or any medical advice for that matter) are not ignorant, as many of these mammogram proponents have often tried to convey - they are actually more well-informed than most because they have chosen to take the time to do their own homework. What each woman ultimately decides is up to her, but she deserves a full and comprehensive statistical understanding of the risks of all forms of treatment (and the risks of a cancer not being found) to make an educated decision.

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  3. I find it fascinating how the headline for the original story in the Oregonian has evolved, as if to try to hide what this study actually conveys and its impact on 1.3 million over-diagnosed women. The original headline, sitting right in front of me in the print copy of the newspaper I received Thursday morning is: "Breast cancer diagnoses draw fire" (and the sub-heading notes the 1.3 million women diagnosed in 30 years). The latest headline online is the benign "Breast cancer study calls for better screening methods, has critics". Wow, that's almost as benign as the tumors that never needed to be treated, isn't it?

    I feel this may be an example of corporate influence on the media. It is also fascinating how few media organizations have even dared to report at all what is obviously a blockbuster news story impacting millions of women - they aren't even touching the story, not even attempting to give multiple viewpoints. Be mindful of this, women, as I think it's quite clear spin control is in play, hiding facts you really need to know to make a fully informed decision.

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    1. Correction: The sub-heading notes the 1.3 million women OVER-diagnosed...(not just diagnosed, that would be a much larger number, about 3 times the over-diagnoses if you read the report)...

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  4. Here is a really good, comprehensive story on the study from The Washington Post. It includes the following quote from one of the authors of the study: "We need to start telling the truth...We’ve promoted this as if it’s the most important thing a woman can do for her health...And the truth is that it’s a really close call.” He later says that if a woman wants to get screened, that should be her choice, "but women who have never felt good about it, who felt coerced into the procedure, should feel equally good about not having it.” Now, THAT's integrity and true respect for the choices of women.

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  5. Here's another nice write-up from CBS News, so happy to see some big news organizations have the courage to fully cover this story.

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