The Silenced Breast Cancer Speaks Up

Nick Mulcahy

October 09, 2014

The incurable form of breast cancer, metastatic disease, is mostly invisible during Breast Cancer Awareness Month in the United States, but some organizations and individuals are working to change that.

However, they are facing an uphill battle because widespread Pinktober promotions strongly suggest that breast cancer can be "beat" and need not be deadly if a person has the right treatment, attitude, and spirit, according to participants interviewed by Medscape Medical News.

Metastatic disease and its association with death dirties the "sanitized" version of breast cancer put forth by "pink-ribbon culture," and is actively suppressed as a result, said Karuna Jaggar, executive director of Breast Cancer Action, an advocacy organization in San Francisco.

They have been asked not to talk about their metastatic disease.

"I've been told by Breast Cancer Action members that they have been asked not to talk about their metastatic disease at charitable walks and runs," she said, referring to fund raisers sponsored by Komen and Avon.

"Members of the public won't donate if they can't solve a problem, so corporations push people with metastatic disease to the background," Jaggar added.

"Death does not sell products," she summarized.

Some members of the metastatic breast cancer community are undaunted. On October 13, for the fourth straight year, they will participate in Metastatic Breast Cancer Awareness Day.

The day, which is the brainchild of the Metastatic Breast Cancer Network (MBCN), has no planned rallies, events, or commercial sponsors. Instead, people with metastatic breast cancer are simply encouraged to speak out and educate others about their disease.

"In particular, we urge patients to use their voice and story at breast cancer walks, church meetings, hospital gatherings, and workplace discussions," said Shirley Mertz, president of the MBCN, in an email to Medscape Medical News. Mertz has had metastatic disease for 10 years.

MBCN has developed a flyer — 13 Facts About Metastatic Breast Cancer — to help patients hit the essential information. Fact 1 is: "No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life."

Fact 6 is: "Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10, or 15 years after a person's original diagnosis."

This idea — that early detection is not necessarily protective against death — is especially disruptive to breast cancer awareness promoters, and therefore is obscured, Jaggar explained.

Metastatic Breast Cancer Awareness Day has humble but community-building, spirited origins.

Mertz explained that it began in 2009, when 12 patients with metastatic breast cancer "traveled to Washington, DC, to personally explain to a number of Senators and Representatives how metastatic breast cancer was ignored during the month of October. We wanted one day in October devoted to our unique disease."

The band of 12 explained to elected officials that the "needs for treatments to lengthen life and for more focused research are drowned out by October media messages that focus on screening, mammograms, and the celebration of survivors," she added.

Next, thousands of metastatic patients contacted members of Congress in support of the idea.

They got their day. "Only two of those 12 are still alive today. I am one of them," added Mertz.

Members of the MBCN hope that the awareness day will result in the "inclusion of metastatic disease in conversations about breast cancer." But at least one member of the MBCN is not waiting to be invited into conversation.

In a searing satiric essay published online earlier this month — entitled Why Can’t Every Month Be Breast Cancer Awareness Month? — Chicago-based Katherine O'Brien lampoons the commercialized culture of awareness that ignores metastatic disease and turns breast cancer into a "pep rally."

People...who will die from metastatic breast cancer this year are Eeyore-like losers — gloomy people with weak attitudes.

"Obviously, the half a million people around the world who will die from metastatic breast cancer this year are Eeyore-like losers — gloomy people with weak attitudes," she writes, referring to the downtrodden donkey in the legendary Winnie the Pooh stories.

"Yes indeed, thanks to 3 decades of breast cancer awareness, we are showing this disease who is in charge," adds O'Brien, who was diagnosed with metastatic disease in 2007 at the age of 42, and writes the ihatebreastcancer blog.

O'Brien, a former English major and current editor of a business magazine, told Medscape Medical News that she had the great Irish satirist Jonathon Swift in mind when writing her essay.

Breast Cancer Awareness Month, with its deliberately simplistic messages, blurs the reality of the disease's heterogeneity, including its deadliness, she suggests. "You know what the greatest thing about having stage IV breast cancer is? Only your oncologist cares about the pesky details. As far as the general public is concerned, we all have the same disease — and it's all good. You'll be fine!"

But there is another possible explanation for the exclusion of metastatic disease in pink-ribbon culture — fear, said journalist and breast cancer survivor Peggy Orenstein in her influential 2013 essay, entitled Our Feel-Good War On Breast Cancer.

She once had a nightmare about her cancer's return after speaking with a woman who developed metastases after a stage II diagnosis, which usually has a 70% chance of cure.

Perhaps because of fear, "metastatic patients are notably absent from pink-ribbon campaigns, rarely on the speaker's podium at fund-raisers or races," wrote Orenstein, who coincidentally is Facebook friends with O'Brien.

Where Is the Money?

Among other things, the long-term hope of MBCN members is for more "focused research" on metastatic disease, said Mertz. Only 7% of all breast cancer funding goes to researching metastatic disease, she said, citing a recent analysis, even though metastatic disease accounts for a considerable amount of breast cancer.

In fact, 5% to 10% of all breast cancers are metastatic at diagnosis, and about 20% of early-stage invasive breast cancer will progress to advanced disease, said Gary Lyman, MD, codirector of the Hutchinson Institute for Cancer Outcomes Research in Seattle.

There are various reasons why early-stage disease gets the lion's share of research dollars, he pointed out.

For example, "enormous resources are needed for early-stage disease studies," he told Medscape Medical News in an interview. Pivotal phase 3 studies in this setting require large numbers of patients to be followed for many years to reach relevant outcomes, he explained.

For cancer research in general, "the whole system is underfunded," said Dr. Lyman.

He is also sanguine about the chances of metastatic disease to see money raised from corporate pink campaigns. "Metastatic disease is not as sellable," he said.

MBCN's Mertz is excited about an initiative known as the Metastatic Breast Cancer Alliance, a cooperative effort of 29 cancer and advocacy organizations, including the Avon Foundation for Women,, the Breast Cancer Research Foundation, Dr Susan Love Research Foundation, and the Susan G. Komen Foundation.

It's not about pink.

"It's not about pink," Mertz noted. The Alliance logo is "bright gray and yellow," she explained.

The Alliance will release its Metastatic Breast Cancer Landscape Report, a blueprint for research, patient needs, and public awareness, next week.

In an article published online last year about the Alliance, long-time breast cancer activist and advocate Musa Mayer acknowledged that observers might question the new group's will power. "I can well understand the skepticism that some may have, because the metastatic community has been neglected for so long," she said.


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