24. “Survival” and “Cure” are NOT Interchangeable Words

In the book “Damned Lies and Statistics: Untangling Numbers from the Media, Politicians, and Activists,” sociologist Joel Best makes the case that good statistics require good data; clear, reasonable definitions; clear, reasonable measures; and appropriate samples.” Unfortunately, what we often find are “mutant statistics,” comparisons of “apples and oranges,” and “stat wars” as stakeholders try to sway public and political investment toward their viewpoint. AnneMarie Ciccarella of the blog Chemo-Brain explains how breast cancer survival statistics are used to promote a form of awareness that has little to do with ending breast cancer and everything to do with branding the diagnosed.

I’m not a fan of statistics. Correction. I am no longer a fan of statistics. I’ve learned the hard way that when anyone is trying to sell me a bill of goods based on statistical evidence that I need to understand and analyze three key things:

  1. Do the statistics represent good data?
  2. Is the information inclusive of all available data, including any footnotes, asterisks or parenthetical remarks?
  3. What is the motivation behind the party quoting the statistic?

Using these criteria, it is easy to see that statistics are not created equal. Small surveys are conducted but do not represent the population they claim to represent. Absolute numbers are skewed. Words like median and mean are used casually to make some grand point. Percentages are averaged over time or include combinations of disparate information. Statistics are generally quoted with an eye toward punctuating an agenda. When this is done in the world of breast cancer, people will often repeat statistical sound bites to make it look like we are making great progress. Are we?

For example, I hear 5-year survival statistics a lot in the cancer world, especially that famous statistic that 98% of people treated for “very early” breast cancer are alive at 5 years. Sounds wonderful, but it is misleading and inaccurate. What about the estimated 20% to 30% of women who have a recurrence of breast cancer and still go on to die from the disease? What about those who are “alive” but not cancer free, or those who are “alive” but suffering from serious side effects, or those who are “alive” but in treatment for the rest of their lives, or those who are “alive” but not “cured”? There is such hype and tremendous overuse of the word “survival” and the survival statistics fuel it.

The word “survival” seems to indicate success in the so-called war against breast cancer. It’s an attempt to show progress and usually to promote mammography screening as early detection. But too many people then attempt to turn that progress into a bridge between survival and cure. This is a false premise. I may be alive right now, but I am not cured. There is no cure for breast cancer. You don’t just “stop having cancer” when you are finished with active treatment, if you’re even lucky enough to finish active treatment.

My mantra, and I will keep stating it until it is no longer relevant, is: “Survival and Cure are NOT interchangeable words.”

I resent the presumption in “breast cancer awareness” campaigns that because I am alive (i.e., a survivor) that I have beat my disease, that I no longer “have cancer.” I have completed a number of surgeries, eight rounds of chemotherapy, and have been on estrogen suppressing medication for four years. It’s likely that I will remain on these drugs for six more years. I will be monitored closely for many years after that. None of this guarantees that I will remain cancer free. Right now I statistically have an excellent prognosis to remain cancer-free. Yet I am acutely aware that I may not remain that way.

That’s the thing with statistics. You never know which group you’ll end up in, the 90% who had “X” or the 10% who had “Y.” I had a rare form of breast cancer so I already know what it’s like to pull the short straw. I was told that, “less than 10% of the time these things are problems.” Then my biopsy results revealed that, lucky me, I was in that “less than 10%” group. On any given day, any one of us who has been labeled a “survivor” can have that label stripped away. Treatment advances are slight, and for those of us who have undergone these treatments, they are ultimately insignificant. We are still being slashed, burned, and poisoned. This comes at a tremendous cost to us physically, emotionally, intellectually, professionally. Too many people are still living with distant organs diseased with breast cancer. Far too many will die. The “no evidence of disease” status does not translate in any language under any circumstances to CURE.

Breast cancer awareness campaigns continue to ignore or downplay this fact by focusing on those optimistic “survival statistics” and the quest for better detection and kinder, gentler poison. This is not the answer. Why is this the focus? From my perspective it’s because of stagnancy. We are stagnant because we are SO “aware.” Dr. Love and Dr. Len are correct when they say that the breast cancer movement is a victim of its own success. Awareness has become our worst enemy. If October continues to be about the breasts, the ribbons, the brand, and the absurdity of items packaged in pink, nothing will change. Being aware does not mean we are educated, and being a survivor does not mean we are cured.

Let’s learn, let’s cure, and most of all, let’s find the cause so we can prevent this horrendous disease from affecting one more generation of women. I am not a Brand. I am a woman who has breast cancer.

Brief Biography:

AnneMarie Ciccarella is a five-year breast cancer survivor with a significant family cluster of disease. She is suffering from long term / late term difficulties that are a direct result of her cancer treatment. This forced AnneMarie to step down from a high functioning accounting position. She began to reach out to other women in similar situations. Presently, AnneMarie writes the blog Chemo-Brain and is utilizing social media to raise awareness about the lack of progress in the treatment of breast cancer despite the billions of dollars spent each year in the name of a cure. AnneMarie resides in a suburb of New York City.

 

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13 comments to 24. “Survival” and “Cure” are NOT Interchangeable Words

  • Excellent essay AnneMarie. I think one of the most egregious uses of statistics is the “5 yr 98%” statistic that is often quoted by Komen for very early stage breast cancer (whatever that means). In fact, I think it’s this statistic that people have in mind when they think breast cancer is curable, or that breast cancer is the good kind of cancer. Way to distract from the very real issues that still dog the breast cancer movement and progress in eradicating this disease,

  • Tru

    I just saw that one slogan used by the Keep A Breast Foundation (the “I Love Boobies” rubber bracelet folks) is “Prevention IS The Cure.” Sweet heaven help us. They think they have figured out how to PREVENT breast cancer. No doubt they equate “early detection,” or perhaps eating well, exercising, etc., with prevention. It’s horrifying how organizations are allowed to spread this malarkey, dressed up as “awareness” and feminist “teaching young women to love and accept their bodies” so that nobody dare question it, lest one look like a big meanie. Oh, and their latest promotion for October? Getting bodacious actresses to make videos of their bare breast being molded in plaster and put them on YouTube.

  • Excellent essay. Thanks for pointing out the many pitfalls the breast Cancer Industry uses to promote the effectiveness of their platform. I wish you a healthy body, a sound mind, and a joyous life.

  • AnneMarie

    Thank you ladies for taking the time to share your thoughts. It means lots to read what everyone has to say. AnneMarie

  • Mary

    Thank you, thank you AnneMarie, for expressing my thoughts exactly. Your focus on questionable statistics, “cures” and prevention are spot on. We need a serious reality check on the methods used to deceive the public into thinking more progress has been made, than actually has been. Anyone who has or is going through treatment, must be made aware that you are required to “choose your poison” I am one of those big “meanies” who have questioned the “I love boobies” and “save the ta-tas” campaigns. How about a “Save the nuts” campaign for testicular cancer? Wouldn’t that go over big with the male population?

  • AnneMarie, you know how I feel about this … I am behind you 100%. Fantastic post!! You rock. Thank you for writing it. And thanks to Gayle too — for giving AnneMarie another platform in which to share her bold and brilliant points.

    My favorite sentences: “I may be alive right now, but I am not cured. There is no cure for breast cancer. You don’t just ‘stop having cancer’ when you are finished with active treatment, if you’re even lucky enough to finish active treatment. My mantra, and I will keep stating it until it is no longer relevant, is: ‘Survival and Cure are NOT interchangeable words.’

    Amen, sistah!

  • AnneMarie,

    Terrific post!! I think that too often when people use the word “survivor,” it seems to signify that the cancer is behind us. Breast cancer is never behind us — physically, psychologically, spiritually. Chemotherapy leached a lot of bone and launched me into premature menopause, causing me to lose even more bone density. And we know that breast cancer can return — or never really go away in the first place.

    I’m not a fan of statistics either. Before being diagnosed with cancer, doctors told me the odds were in my favor, 1 out of 12. Well, I was that one. I was told during my chemo treatments that only 1 percent of women with my treatment had premature menopause as a result. Guess what, short end of the straw again!

    Outstanding post, AnneMarie!!

  • Great job putting into words how so many of us feel about these two words being thrown around so loosely. They most certainly are not interchangeable. Sadly, there is no cure for breast cancer. That’s why it’s not possible for us to simply move on or get on with it when treatment ends. I’m not a statistics person either, but I do know that 98% survival rate after five years is completely misleading. Thanks for writing such an important post. Well done.

  • Thank you so much for expressing my feelings. Two years ago my then 10 yr old daughter was diagnosed with stage 3 ovarian cancer. She had a complete hysterectomy and chemo. Her doctor tells us the cancer is gone, but like most people, she suffers greatly from the effects of surgery, chemo and the cancer. (I try real hard to ignore ovarian cancer stats…) I get so ANGRY at people who tell me not to dwell on it; to be grateful she’s alive. They seem to have no empathy for the physical and emothional pain that lingers. And they sure don’t want to hear about the realities of the cancer industry. Thank you for reminding me we are not alone. Group hug everybody!

  • Bingo! Love it, Anne Marie.

    Statistics are great, but first we have to really understand what Is being measured. There has been a lot of misleading this year.

  • Thank you for sharing your thoughts with me. It seems we all have similar feelings about every aspect of this disease. The fear, the emotional toll, the physical issues caused by treatment that hasn’t changed much in 24 yrs. Shortly after I wrote this I began looking through my moms medical records only to see that my treatment in 2006 was a mirror of hers in 1987. All the money raised under the pink ribbon and this is progress? If we all stick together, we can change the conversation and make a real difference. Noteworthy? I had the misfortune of timing with my initial and all follow ups in October. This year, I didn’t see a pink ribbon ANYwhere at Sloan Kettering. Not even on the dedicated breast cancer floors or buildings. That’s a start.

    And again, Gayle…..thank you for shaing my thoughts with your readers.

    Best to all,
    AnneMarie

  • AnneMarie, I missed this post the first time around. I have always been suspicious of statistics, especially after taking a class in it that was required for grad school. Statistics are not feelings, or reality, or experience. They can be manipulated. They leave out so much. Brilliant post. Glad we’ve met in cyberspace. xoxo, Kathi

  • Kathi,
    I am SO glad you commented on this post now. First of all, I was honored that Gayle invited by to share my thoughts on her blog. To read the comments from everyone meant so much to me. Today, it means that much more as I see both Rachel and Susan commented on this same post. I feel somewhat comforted to see this all in one place…..

    xoxoxox
    AnneMarie

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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** MORE RADIO INTERVIEWS **