Metastatic Breast Cancer Awareness Day: October 13th

October 13th is Metastatic Breast Cancer Awareness Day.

One might wonder why it is necessary to parcel out a specific day during the month of October to take note of something like metastatic breast cancer (BC Mets). After all, the month is already dedicated to breast cancer awareness.

Don’t we already know everything there is to know about this disease? Aren’t we already aware that breast cancer metastasis (i.e., the stage 4 disease that spreads to other parts of the body like lungs, liver, brain, and bones) is responsible for the some 40 thousand deaths from breast cancer each year? Aren’t we aware that at least 155 thousand people in the United States (and some estimates suggest that the number is closer to 250 thousand) are currently facing metastatic breast cancer and will never finish treatment, or that, as Musa Mayer and Susan Grober write, “between one-half and two-thirds of women diagnosed at Stage II and III will ultimately develop metastatic disease”?

Probably not.

The pink ribbons, balloons, streamers, and hot pink feather boas say nothing of these breast cancer realities. They speak only to the festivity and visibility of the cause, just like the thousands of other pink ribbon displays and products saturating the cultural and consumer landscape and claiming to raise “awareness.”

C.J. (Dian) Corneliussen-James

When I asked C.J. (Dian) M. Corneliussen-James, breast cancer survivor and founder of METAvivor Research and Support, Inc., why the story of breast cancer metastasis is largely missing from mainstream awareness messages, she said,

To put the statistics out there would be to admit that despite the billions spent on breast cancer over the last decade, and despite all the hype, media, happy faces, and tales of beating the disease, we have made virtually no progress in halting death from this disease. This would not be good for the fundraising campaigns of the big cancer organizations.”

Indeed the fundraising impetus and desire to create a recognizable brand among many breast cancer organizations has contributed to a slew of superficial awareness messages, narrow representations of survivorship, and an abundant focus on simple actions that do little more than fuel the pink fundraising machine while simultaneously preoccupying the public with fear of breast cancer, hope for a cure, and the promise of early detection and lifestyle as the best weapons against the disease. The marketing machine works. However, the strategy has not succeeded in eradicating breast cancer, raising consciousness about the realities and complexities of the disease, or alleviating the suffering of those who are most likely to die from it. In addition to its invisibility to the public eye, BC Mets is also missing from research allocations and support scenarios.

A large proportion of the monies raised in the name of breast cancer never make it to any research agenda. When they do, however, the focus of that research is primarily on early detection and prevention—not so much systemic prevention such as attention to environmental exposures, but individually-focused prevention (e.g., does a particular supplement, food, or behavior affect the development or progression of breast cancer?). Though there is a clear place for this type of research, Dr. Danny Welch argues that if metastatic research were fully funded there could be a significant reduction in suffering and death from metastasis. Dr. Welch is one of only 1000 researchers worldwide studying breast cancer metastasis.

Abundant attention to fundraising, generalized awareness, and early detection for those who do not have breast cancer and are not likely to die from the disease creates a situation in which those who are most in need of social support, resources, and understanding are largely ignored. C.J. reports that at last count there were 41 support programs in the United States oriented to BC Mets and ten of these are located in one state, New York. Most of the country has no support systems in place, partly because the story of metastasis does not blend in with other popular programs. The desire to keep the breast cancer story one of hope and success makes fundraising campaigns more fun and successful. It also makes the discussion of breast cancer more palatable for those who have not yet been diagnosed with metastatic disease. C.J. says,

Earlier stage individuals would be frightened if we spoke openly about our situations. They do not wish to hear that metastasis can and does happen all too easily and that healthy lifestyles, excellent medical care, early detection and seemingly successfully concluded treatment, do not necessarily protect you from metastasis.

The lack of attention and resources to BC Mets reinforces the false impression that current strategies in the so-called war on breast cancer are working. For many, it is unsettling to complicate this view. If the end in mind is to significantly reduce breast cancer incidence and mortality, the story of breast cancer metastasis—in all of its messiness, uncertainty, and complication—must be heard.

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 METAvivor Research and Support, Inc. is run mostly by those who have metastatic breast cancer. The organization was created to increase awareness, support, and research specifically for BC Mets. Each year METAvivor presents its research awards on Metastatic Breast Cancer Awareness Day, October 13th. For more information on METAvivor and the organization’s founder, read: Dian Corneliussen-James: A Woman On A Mission from Pink Ribbon Blues and Breast Cancer Research: Where We Are and Where We Should Be by C.J. Cornelliusen-James.

The Metastatic Breast Cancer Network will hold its 6th National Conference – ”Moving Forward with Metastatic Breast Cancer” — at Northwestern University, Robert H. Lurie Medical Research Center in Chicago on Saturday – October 13, 2012 from 8:00 AM – 5:30 PM. Click here for more information.

For more consciousness raising essays, check out “30 Days of Breast Cancer Awareness” from 2011 and the Breast Cancer Consortium’s Tools for Action.

 

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2 comments to Metastatic Breast Cancer Awareness Day: October 13th

  • To Gayle, another woman on a mission–thank you so much for your beacon of reality about what has and has not been accomplished. Your efforts personally touch my life: Hospice is now with Jane, Erin’s (daughter) mother-in-law (breast cancer metastasis). Your work is like a ray of sunshine for the future though Jane will not benefit.

  • I’m so sorry to hear about Jane. I’m glad she is getting support and care. My heart goes out to you and your family.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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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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