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”?
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.”
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.
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.