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, 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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Alana Welm, PhD Gives Her Research Updates from Year One: Metastasis Prevention

May 6, 2012—Welm discusses the very difficult and complicated process of targeting metastasis as key to preventing death from breast cancer.

Bio: Alana Welm, PhD is an Investigator at Huntsman Cancer Institute and is an Assistant Professor in the Department of Oncological Sciences at the University of Utah where her laboratory is entirely focused on breast cancer metastasis. Welm received her BS from the University of Montana and her PhD from Baylor College of Medicine. She completed postdoctoral studies in J. Michael Bishop’s lab at the University of California, San Francisco. She joined the Huntsman Cancer Institute in January 2007. 

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A Choice: Hold On To Fear Or Be Inspired By It!

By Shirley Mertz

Shirley Mertz spoke about breast cancer at the White House Champions of Change, September 2011. (Pictured left to right, NBCC advocates Amy Bonoff, Joy Simha, Shirley Mertz, Pat Haugen, Wanda Lucas)

October is again upon us. It is the month of what I call pink haze. Countless pink ribbons and pink tee shirts will be worn by thousands of women across the country.  The media will offer up stories of individuals who celebrate the end of their treatment for breast cancer and share how long it has been since their diagnosis. All will embrace their triumphant return to life as normal. Some will even speak proudly about how breast cancer motivated them to live differently after their journey.

For a woman like me, the story of breast cancer has a different outcome. For the past nine years, I have been receiving treatment every three weeks for advanced or metastatic breast cancer that spread to my skeleton and into my liver. Receiving a targeted treatment and chemotherapy, I went into remission seven years ago. I am very blessed. But, I am not cured. Patients like me hope that treatment will keep the cancer from growing or prevent the cancer from destroying a vital organ like the liver, lungs or brain that will end our life. When a treatment stops working (its called treatment resistance), we hope that there is another treatment that will work. That is not always the case. In fact, 39,520 women and 450 men died of advanced breast cancer in 2011.

In spite of 155,000 people currently living with metastatic breast cancer in the United States, our voices are essentially ignored and excluded in breast cancer conversations during October. Why? I offer two reasons. 

First, our story is not a pretty pink story with a happy, triumphant ending.  We cannot say we are finally through with treatments. Nor can we announce, “I beat breast cancer!” 

Second, the stories of metastatic breast cancer patients fly in the face of those early stage breast cancer patients who want to feel cured after going through treatment. Anxiety and fear about cancer coming back is very common among patients who receive a breast cancer diagnosis. I know because I held that fear for 12 years after being diagnosed with early breast cancer in 1991. Though I received regular checkups during those years, I became one of the 30 percent of early breast cancer patients whose breast cancer comes back as invasive or metastatic cancer even after receiving proper treatment for early stage disease.

Why is this still happening?  More importantly, why are women allowing this to happen?

The truth of the matter is that in spite of millions of dollars of research, researchers do not have good answers that can change patient outcomes. Scientists have not been able to explain what triggers cancer cells to leave the breast, hide for a long time and then emerge in another site in the body—a process called metastasis. Unraveling this deadly process of metastasis involves doing difficult scientific research. Truthfully, there are very few scientists who study metastasis. And, the current system of how scientists progress in their career does not encourage young scientists to tackle really hard questions that might take a long time. To get ahead in their careers, scientists must do research that gives them publishable data in a relatively short time. 

An even larger challenge to finding the causes of metastasis is that funding mechanisms do not give priority to that question. We research all kinds of issues related to breast cancer, but only 6 percent of breast cancer research dollars awarded through the National Cancer Institute are devoted to the study of metastasis—the kind of cancer that kills. The research devoted to metastasis through the Department of Defense Breast Cancer Research Program (DOD BCRP) is greater—25 percent—but most other research funding sources are focused in other areas. People support breast cancer research without asking “What kind of research?” And, “Will this research prevent deaths?” Instead, messages in October make us believe that finding breast cancer early means you will be cured (it does not) and that every kind of research contributes to a cure (it does not).

To once and for all untie the pink ribbon, I ask survivors of early stage breast cancer to embrace their fear and be inspired by it. 

What we do not recognize we cannot change. And, unless we choose to select an empowered response to our fear, the fear will always be there. And, the deaths from breast cancer will continue.

We all should be angry that breast cancer continues to rob us of the lives of our mothers, sisters, daughters, grandmothers and friends before they have lived a normal life span. If we all can embrace our fears and collectively demand to know the causes of metastasis, we can end the dying. We must demand a change in the focus of research so that no one has to face the prospect of getting metastatic breast cancer or dying from metastatic breast cancer. Early stage breast cancer survivors could finally remove the fear from their mind that their breast cancer will come back and threaten their future. 

So how can we get the research we need? All women and those who love them should sign the petition to support the National Breast Cancer Coalition’s Breast Cancer Deadline 2020®, which calls upon the President to use available resources to support strategic research that will identify the causes of metastasis and how that process can be prevented.

Embrace your fears and be inspired by the fear to join an effort that I am confident will finally end deaths from breast cancer.

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Dr. Ann Chambers, PhD Provides Research Updates from Year One: Metastasis Prevention


May 6, 2012—Dr. Ann Chambers, PhD, presents the role of tumor dormancy in her discussion of the progress and challenges in preventing metastasis.

Bio: Ann Chambers, PhD is Professor in the Departments of Oncology, Pathology, and Medical Biophysics at the University of Western Ontario, London, Ontario, Canada. She also is the Canada Research Chair in Oncology and a Distinguished Oncology Scientist at the London Regional Cancer Program. She is the founding Director of the Pamela Greenaway Kohlmeier Translational Breast Cancer Research Unit. She received her BA in Botany and her PhD in Zoology, both from Duke University, and completed post-doctoral studies at the Ontario Cancer Institute in Toronto. Her laboratory studies mechanisms of cancer metastasis and tumor dormancy.

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Can We Stop This Morbidity and Mortality?

By Maria Wetzel

Maria Wetzel

When I was diagnosed with metastatic breast cancer just about two years ago, I thought I knew a lot about metastasis and thought I had an understanding of what it was like to live it. But I found out the reality was really quite different, and nothing about it was good.

Breast cancer is taking away so many years of lives. Continuous treatment, frequent scans, tests, appointments and drug toxicities significantly affect our quality of life. Children are left without  parents, spouses without their mates, friends die. Milestones are missed. Plans are for the immediate future, not for years away. Dreams are turned into more doable bucket lists.  “Getting our affairs in order” becomes prudent.

Can we stop this morbidity and mortality? It’s a huge challenge, which will certainly not be met by awareness campaigns, marches, races, ribbons, or merchandising of pink products.

So how can we possibly reach that goal? Primary prevention of breast cancer is one way, certainly the most effective in the long run. Curative treatment for primary disease is another way because the intent is always to prevent the growth of cancerous cells outside the breast. A third way would be to keep those cells quiescent forever. And finally the most difficult way would be to find the cures for metastatic disease.

The National Breast Cancer Coalition’s Breast Cancer Deadline 2020® has made primary prevention of breast cancer one priority and prevention of metastasis the second.

What is metastasis? Is it the spread of cells outside the breast, or is it the growth of a detectable tumor in a distant place? The first seems impossible to prevent because, for many, it is thought to have already happened when a primary tumor is diagnosed. For others, however, it may be that primary treatment does prevent this from happening. Even if cells escape the breast, growth of a detectable tumor is not a given; to do the deadly deed they need to find a suitable place.

A small but significant number of recurrences occur after the oft-mentioned 5-year mark. 10, 15, even 20 years is not unheard of.  What awakens those cells? Do they change or does the surrounding neighborhood change? And are there ways to prevent it from happening with relatively non-toxic long term treatment? We hear about vaccines, stem cells, targeted radioactive particles, nanotechnology. What about metformin, COX2 inhibitors, very low dose chemo, Vitamin D, mistletoe extract, cinnamon, curcumin, aspirin, exercise, diet? What about all those promising things that are in the headlines? Surely there have to be some answers out there.

We do know a lot about the whole process of metastasis but, obviously, not nearly enough to consistently prevent it or halt it. What are the differences between primary tumors and metastatic tumors? Do they differ by site? Do subtypes spread in unique ways? To get the answers to so many questions we need many more researchers who will take on the challenges of dedicated metastatic research. Just as important, they need to be well funded.

Only then will we be able to stop the dying from breast cancer.

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Keith Knutson, PhD Offers Research Updates from Year One: Primary Prevention


May 6, 2012—Knutson presents the vaccine approaches being considered in the Artemis Project®; explains why immunologic pathways hold so much promise, and how the vaccine project is a realizable goal.

Bio:Keith L. Knutson, PhD is an Associate Professor in the Department of Immunology at the Mayo Clinic. He received his PhD from the University of Georgia in 1995. He is a previous recipient of the prestigious Howard Temin Award from the NCI. His research focuses on the immunotherapy of breast and ovarian cancers. Interests are in both the basic immunobiology and clinical translation. In addition to his research, Dr. Knutson participates in and chairs several study sections, and is Director of the Mayo Clinic Cancer Immunotherapy Program.

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The Possibilities of Success When We Shake the Status Quo

By Debbie Laxague

Debbie Laxauge

My interest in vaccines as they relate to cancer goes back to when I still considered myself to be a patient (as opposed to an advocate).  Early in this century, there seemed to be trial after trial that reported “positive” results for therapeutic breast cancer vaccines.  Upon investigation of the small print, however, it would become clear that they were reporting that while they could measure immune responses to the vaccines, this didn’t follow through to mean success in preventing or decreasing cancer.  Which was not my idea of a “positive” result. 

By the time I was invited to participate as an advocate in NBCCs Artemis workshops, I had pretty much lost all enthusiasm that vaccines or immunotherapy could be a solution to any aspect of breast cancer.  So I attended my first meeting as a certified skeptic.  And I was not the only skeptic present.

As is usual for NBCC undertakings, much thought and planning went into the guest list for the Artemis meeting.  The people sitting at the table that first Artemis Project® meeting were leaders in their fields of immunology, oncology, policy and advocacy.  The basic task was to answer the questions “is it the right time to ask if we can make a prophylactic breast cancer vaccine.”

For a few people at the table, the answer was an emphatic YES.  For others, it was a definite “no way.” Most of the rest leaned toward skepticism, but with interest.  The discussions began slowly, with short presentations on different aspects of cancer immunology.  These were followed by long discussions that revealed not just the complexity, but also the progress that has been made in understanding the role of the immune system in both cancer control and growth.  Amazingly, by the end of the meeting, everyone in the room believed that it was time to look at the idea of a prophylactic breast cancer vaccine.

To be a small part of this process renewed my enthusiasm for the possibilities of success with breast cancer vaccines. But more importantly, it showed me what can happen when we stop doing the same things, at the same pace, in the same ways.  With NBCC’s guidance, the brilliant minds sitting at that first Artemis table were able to take off the blinders that kept them tunneling down into the narrow confines of their own area of expertise.  They were able to share and combine their experience and brilliance in ways previously not considered.  In addition, with advocate presence and the focus of Breast Cancer Deadline 2020®, NBCC brought a new sense of urgency and time constraint to the forefront of the explorations.  It is exciting to know that this approach will be equally successful when applied to the other arms of NBCC’s Breast Cancer Deadline 2020®.

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Paul Ewald, PhD on Research Updates from Year One: Primary Prevention


May 6, 2012—Ewald has been thinking about how evolutionary ideas can help solve medical problems. In this presentation, he helps answer the question, “Can evolution help us understand how to prevent or cure breast cancer?”

Bio: Paul Ewald, PhD is Professor of Biology and Director, Program on Disease Evolution, University of Louisville, with joint appointments in the Department of Biology and in the Departments of Microbiology and Immunology at the School of Medicine. Professor Ewald received his BSc in Biological Sciences from the University of California and his PhD from the University of Washington with a specialization in evolutionary biology. He was the first recipient of the Smithsonian Institution’s George E. Burch Fellowship in Theoretic Medicine and Affiliated Sciences. Professor Ewald was previously at Amherst College, where he was the Dominic Paino Professor of Global Environmental Studies. He also held an adjunct appointment at the University of Massachusetts. Ewald is recognized as a principle founder of evolutionary medicine, by virtue of the papers and books he has published since 1980.

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Artemis Project®: A Collaboration of Scientists & Advocates

By Michele Rakoff

Michele Rakoff

So often we are told to be patient in our quest to find the answers to what causes breast cancer and how to prevent it. But we have no more time nor interest in being patient because more than 290,000 women and men are diagnosed each year with breast cancer in the United States, 40,000 die and many more are living with metastatic disease.

I have been a National Breast Cancer Coalition member for more than 20 years and have witnessed our many accomplishments to achieve our mission of ending breast cancer. With that said, it is 20 years later and we still do not know how to end breast cancer. My patience was running out. So when I learned that the National Breast Cancer Coalition was launching Breast Cancer Deadline 2020®, I knew we were taking the right action. I was energized to learn that I would be an advocate member of the Artemis Project®. What I came to realize was that this is a novel and intense collaboration involving scientists and advocates looking for a vaccine for primary and metastatic breast cancer. The first annual meeting was one of asking whether this was possible and if the teams could work together. Much work was done between the first and second meetings, and scientists and advocates were talking.

At the second meeting sparks started to fly as scientists moved outside of their institutional silos offering their expertise and calling on each other to add to the wealth of knowledge. Advocates asked hard questions and scientists were actively engaged in seeking answers.  This active collaboration continued throughout meals, during walks and into the evenings with scientists and advocates involved in discussion. Also included were thought leaders and representatives from industry, business and health care. All of the Artemis advocates are Project LEAD® graduates who continue to collaborate with scientists on research trials, who sit on scientific panels and who interact with breast cancer patients. The big challenge is that we are talking about immunology, which is a different language and a different way of approaching breast cancer research.  But all want to be a part of that challenge.

Flying home from the meeting, I felt that many issues were addressed and that a clearer direction was formed. However, the most encouraging thoughts were that scientists and advocates were interested in working together to deliver their piece of the puzzle, truly overriding any individual interest.  There was an understanding that we could achieve our goal by working together.

Collaborations continue and a recent webinar was held to update members on project progress and to give advocates the opportunity to ask questions and move forward.

The group will meet in March 2013 to again move the Artemis Project® forward as part of Breast Cancer Deadline 2020®. Visit to follow and learn more about the Artemis Project®.

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President’s Rally Address at the NBCC 2012 Annual Advocate Summit

May 5, 2012—NBCC President Fran Visco shares the accomplishments of year one of Breast Cancer Deadline 2020®; and provides a look ahead to the challenges of year two.

Bio: Fran Visco, JD is a more than 20 year breast cancer survivor, the first president of NBCC, and a member of its Board of Directors and Executive Committee. Visco was a partner in a Philadelphia law firm before leaving law to focus on NBCC work. In 1993, President Clinton appointed her as one of three members of the President’s Cancer Panel, and she was the first consumer to chair the Integration Panel of the DOD Breast Cancer Research Program. She co-chaired the National Cancer Policy Board. She has testified before Congressional committees and lectures throughout the United States and internationally on the politics of breast cancer, women’s health advocacy issues and Breast Cancer Deadline 2020®.

Like this? Watch other thought-provoking conversations at the Online Center for NBCC Advocacy Training.

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