The Big “C”

Early detection does not save lives!  Study after study shows this to be true.  “And yet,” as Peggy Orenstein states in her recent New York Times article, “mammography remains an unquestioned pillar of the pink-ribbon awareness movement.” 

Of course, I needed confirmation on this.  “Is this true?”  I asked my oncologist.  “Is it true that early detection does not save lives?”  “Yes, “she said, “it’s absolutely true!”  In fact, not only does early detection not save lives it has its costs; misdiagnosis, over treatment, and causing unnecessary fear for many many women.  

I have always suspected this to be true.  Now, I finally know it to be true.     

This puts me in a bit of a conundrum.  But before I disclose my dilemma, please read on.

In the article, “Our Feel Good War on Breast Cancer, Orenstein explains that:

“Breast cancer in your breast doesn’t kill you; the disease becomes deadly when it metastasizes, spreading to other organs and bones.  Early detection is based on a theory, dating back to the late 19th century that the disease progresses consistently, beginning with a single rogue cell, growing sequentially and at some invariable point making a lethal leap. Curing it, then, was assumed to be a matter of finding and cutting out a tumor before that metastasis happens.

The thing is, there was no evidence that the size of a tumor necessarily predicted whether it had spread.  According to Robert Aronowitz, a professor of history and sociology of science at the University of Pennsylvania and the author of “Unnatural History: Breast Cancer and American Society,” physicians endorsed the idea anyway, partly out of wishful thinking, desperate to “do something” to stop a scourge against which they felt helpless.”

Thus, the birth of the American Cancer Society.

Although these physicians had good intentions, pushing for early detection has created a national scare.  What was once awareness, for good reason, is now over awareness resulting in fear and over treatment.  A New England journal of Medicine study of early screening and over treatment estimated “that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.” 

Not only does such a small percentage benefit, but over 60,000 women each year in the US alone are “misdiagnosed” with cancer.  These women are diagnosed with Ductal Carcinoma in situ (D.C. I. S.) or stage Zero.  In-situ means in place.  “D.C.I.S. is not cancer,” explains Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. “It’s a risk factor.  For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old.”

Once a woman is diagnosed with D.C.I.S she usually undergoes a lumpectomy and radiation and is marked as having “breast cancer” for the rest of her life.  And in some cases, women decide on preventative mastectomies.  “We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?” asks Esserman.

As crazy as it may sound, studies have suggested that the majority of these women’s D.C.I.S. will go away on its own if left alone.  And, some tumors are so slow moving they will never metastasize.  According to the article, “Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.  And, “By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.”

So Esserman is shaking things up and wants to rename D.C.I.S. by removing the big “C!” This is her attempt to help put things into perspective, lesson women’s fear and put an end to over treatment. 

So, if 60,000 of the 240,000 women that are diagnosed with breast cancer each year do not really have cancer, this skews the numbers.  It is no longer 1 in 8 women that get breast cancer.  It is a much lower risk.  Can someone help me with the math please?    

Since early detection has been promoted, it is true that more people are going to the doctors.  According to Orenstein, “More cancers have been detected, more operations performed and more patients have survived their initial treatments.  BUT, the rates of women dying of breast cancer hardly budged.  Those increased diagnoses were not translating into saved lives.”

Orenstein explains, “The disease, it has become clear, does not always behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment.”

I was diagnosed with two of the four types of cancer.  I had tumors that fed on estrogen and another called Her2 positive which produces too much of a protein, the human epidermal growth factor receptor 2.  Unfortunately, I was not one of the 60,000 women that was over diagnosed and over treated.  Or, shall I say fortunately?  As Orenstein and I both ponder, “Should these women that are diagnosed at Stage Zero, be hailed as survivors or held up as a cautionary tale?”

So here is my conundrum.

But first a picture of Daisy Chain’s performance at Still Water in Dana Point this week.  Thought I should lighten the mood a bit.

Performing "Give Me Some Loving" Blues Brother's version

On behalf of the Susan G. Komen Orange County Affiliate, I have been invited to be part of their Inaugural Survivor Advisory Committee.  The invite is being extended to me because of my experience, expertise and passion for the cause. Those are their words.  The committee will be charged with providing recommendations on strategies to meaningfully engage breast cancer survivors and co-survivors throughout the year, as well as, provide critical insight and perspective on our current affiliate programs, events and activities as it pertains to survivor relevance.  It is quite an honor. 

But, I happen to know that Komen tends to push for early screening.  In fact, of the $472 million dollars raised last year by Komen, 16% went to research and a whopping $231 million went to education and screening.  Komen does acknowledge these findings on their Web site however they continue to pour funds into early detection instead of research for a cure. 

So, is the pink movement hurting more than helping, especially women and men whose lives are most at risk?


When I first learned of this, my initial reaction was to take a stand, pull out from the race, and not join the committee.  But, in all honesty, Komen has been a huge part of my healing process.  Personally, I love how Komen has transformed victims into survivors, raised 75 million for research (that is nothing to sneeze at) and helped fund the drug Herceptin which has saved many lives, including my own.  And, the 3 day walk is awesome.  I would not have missed it for the world.  Oh, and I can’t forget The Mammary Chronicles which would have never come to fruition without the need to raise funds for the 3 day walk. 

Remember, there was a day when breast cancer was a socially taboo subject and they would not print the word breast in the newspapers. Instead they called it “female cancer” which is a bunch of bologna because men get it too.  I was a freshman in high school at the time.  I truly thought we were more progressive in the 80’s than that. Today, fundraisers, pink ribbons, “I Love Boobies” bracelets, and “Save the Ta Ta’s t-shirts abound.   

No, Komen has helped change my life and the face of breast cancer.  I truly believe there is more to cancer than just the biology of it and healing is more than surgery and chemo.  So, instead of boycotting them, I will join them and try to make changes from the inside.  I suppose I may be dreaming.  How is little bitty Deanne going to change the world?  I don’t know, but I would feel better trying and failing than not trying at all.     

I have been to two meetings so far to see what it is all about.  It’s pretty cool actually.  I am in the process of helping to plan a survivor’s luncheon in August in which OCSA commercial music and The Mammary Chronicles will be performing in front of 300 survivors and co-survivors. 

OCSA Commercial music - Casey, Luke, Jonathan and Randon performing at the Grammy Museum

I guess I am no longer in a conundrum.  I may not have changed the world yet, but I have changed my mind.  I have made a decision to at least give it a try.  The Inaugural Survivor Advisory Committee it is!  And, although early detection does not save lives, I am convinced that the pink movement does!

2 Responses to “The Big “C””

  1. clare Says:

    Hey, Elizabeth Cady Stanton, Leucretia Mott, Susan B Anthony, and all their fellow fighters put up with national ridicule and died of old age long before their cause was victorious. But their names went down in history for their gutsiness and what it achieved. The world is changed by gutsy women. What a valuable piece of research you have put together and what a valuable impact you will have on the Komen Foundation and the fight.
    Love your guts

  2. Caprice Says:

    This is a fantastic article Deanne and yes, it’s true, I’ve been aware of the studies for years that the general public isn’t being made aware of. I love how you addressed your conundrum! I am a huge encourager of getting thermography instead of mammography. They don’t touch you, no radiation, no potential spreading, and can detect cancer long before mammography can (as well as other health issues). You are probably well aware of this option. I wish more people knew and that Komen would promote it as a better alternative. There is too much invested in mammography though :-(

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