Beyond the Pink: Reflections on Metastatic Breast Cancer Awareness

By Musa Mayer

Musa Mayer speaking at the 2012 NBCC Annual Advocate Summit

“Boo! It’s October, It’s Halloween, It’s Breast Cancer Awareness Month. And I’m the bogey-woman who needs to be kept in the closet.”

The year was 1995 when Karen Caviglia, a breast cancer activist, wrote these words for a Massachusetts newsletter a few months before metastatic breast cancer took her life.

In 1997, when I published the book in which Karen was quoted, 43,900 American women died of breast cancer. In 2012, an estimated 39,510 will die. With billions of research dollars spent over these 15 years, have we made progress in ending the devastating impact of this disease? Not nearly enough.

You’d never know this from the prevailing media culture in America. The races and walks, the incessant TV hype about promising research breakthroughs in breast cancer treatment, the pink ribbons adorning everything each fall, the throngs of women celebrating survivorship, and most of all the proliferation of pink cause marketing—all these have made us all abundantly “aware” of breast cancer.

But that awareness has largely been limited to the disease in its earliest stages, and no one feels it more acutely than women who are forced to cope with advanced disease.

In 2004, Jane Soyer and Nina Schulman, two advocates from New York City, co-founded the Metastatic Breast Cancer Network (MBCN). “As a woman living with metastatic disease,” Nina wrote later, “I had felt isolated and excluded from the very groups that were set up to help woman diagnosed with breast cancer. I realized that the breast cancer community had become a place for ‘survivors’, not for people living with breast cancer every day of their lives. We were not being seen or heard. No one was trying to meet our needs. No one was listening.”

Why are they still not listening today?

In large part it is the continuous and devastating losses. MBCN is already in its third generation of leadership, having first lost Jane and Nina, and then Ellen Moskowitz, who replaced them. Now others have taken their place in organizing the annual conferences they hold at major cancer centers, and in promoting October 13 as Metastatic Breast Cancer Awareness Day each year. A continual need to seize the initiative from fallen comrades is a sad and necessary reality of breast cancer advocacy, especially if women with metastatic breast cancer are to advocate for themselves.

That’s a tough story to tell. It isn’t pink, or pretty. But it is the truth.

Emotionally, it’s far easier to focus on those deemed “cured,” and to embrace the false reassurance of 98% five-year disease-free survival data for Stage I breast cancer as an achievement to celebrate, a widely advertised but deceptive statistic, as pointed out by two well-known Dartmouth physicians recently. The truth is that uncertainty and fear of recurrence are hallmarks of a disease that can and does come back in its fatal form even decades after diagnosis, and that ultimately may take the lives of up to 30% of those initially diagnosed with early-stage disease.

A focus on early detection and screening has undoubtedly had some impact on breast cancer, but it’s become increasingly clear that that the benefit is far less than hoped. In the decades since mammography was introduced, cases of localized breast cancer and ductal carcinoma in situ (DCIS) have soared, as might be expected. But the much more modest decreases in advanced disease and mortality have led to concerns about false positives and unnecessary diagnosis and treatment of women with non-lethal forms of breast cancer. Experts differ, but one systematic review concludes that 2,000 healthy women must be screened for 10 years to prevent a single death.

We’ve spent decades focusing on screening and early detection. Clearly, if we are to end breast cancer’s devastating impact, the time has come for new strategies. The National Breast Cancer Coalition’s Breast Cancer Deadline 2020® initiative has taken on the goal of ending deaths from breast cancer, which will mean developing the strategies by the end of this decade to prevent and halt metastasis, the overwhelming cause of death from the disease. NBCC’s petition calls for the President’s stand in making the end of breast cancer a national priority.

Today, advocates for people living with metastatic cancer are speaking out on many issues about the lack of basic research that directly addresses the metastatic process. The lack of research using metastatic tissue, as opposed to tissues taken from early breast cancers. The problems with acquiring metastatic tissue and securing funding to support that research. The need for new paradigms and trial designs in development new treatments. The importance of a collaborative vision and strategic plans to advance the science and end the dying.

They are also speaking out about the scarcity of existing services for women with metastatic breast cancer and their families, a lack that is now well documented and has begun to improve in recent years, thanks to the efforts of a few organizations like CancerCare and Living Beyond Breast Cancer. Women living with metastatic breast cancer like Katherine O’Brien are blogging their stories and calling for advocacy and action.

But metastatic disease is still hard to talk about. In their most recent campaign, the organization METAvivor, which funds metastatic research and increases awareness, refers to this reality as “The elephant in the pink room.”

While there are more voices every year speaking out about metastatic breast cancer, they are still drowned out by the pink tide of marketing each October.
This month, Liz Walter, the daughter of a woman who died of breast cancer, wrote to BCMETS.org, an online community of some 1,500 women and men struggling to cope with metastatic breast cancer:

“Today I posted my now-yearly Facebook post, “she wrote: “Please don’t buy pink crap and think it’s honoring my mom…”

 

 

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