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Wednesday, May 25, 2011
ONLINE FIRST: Anchored Activism

Earlier this month I attended the National Breast Cancer Coalition’s (NBBC) annual training conference with a group of breast cancer survivors and advocates I’ve met through the blogging community.


Within this funny, intelligent, and animated group are three women who are living with metastatic disease. Two of them have inflammatory breast cancer. So yes, it can certainly be said that we had a vested interest in the proceedings.


What we discovered is what NBCC does extraordinarily well: state a challenge, put the stick in the sand, and wrap a conference around the concept.


The stick in the sand is their stated goal of ending breast cancer by 2020; the conference wrap was “Changing the Conversation.” Panel after panel of nationally recognized physicians, researchers, policy experts, and writers deconstructed breast cancer from every conceivable angle. Every single speaker was exceptional.


The opportunity to hear Dennis Slamon, MD; Susan Love, MD; Danny Welch, PhD; journalists Sharon Begley and Gary Schwitzer; and a brilliant conversation by physicist Paul Davies, PhD., was pure brain candy, like a TedX devoted to breast cancer.


What’s new, an editor asked me after I got home. Nothing was really new per se, but some of the concepts – from tumor microenvironments to the work of Pat Steeg, PhD, at NCI -- were new to me. Why then, my growing dis-ease? I was, after all, the recipient of a scholarship that covered my registration fee and three nights’ shared accommodations.


For all intents and purposes my thoughts on the conference should have been a blog post, or a series of them, summarizing various initiatives.


Midway through the conference an NBCC report, “Ending Breast Cancer: A Baseline Status Report1 was made available for all attendees. Why the delayed distribution (unless there was a printing problem) was never really clear; nor was the content directly discussed in any of the plenary sessions.


“Ending Breast Cancer” is heavy reading and redundant, weighty but not always clear, with sections on treatment, public policy, research, and advocacy. 


I was startled by assertions like this: Despite public perception to the contrary, the US has made little progress toward ending breast cancer.1, 2


To understand what the public thinks or doesn’t think about progress in treating breast cancer is something that should have been measured to make that claim, but it wasn’t.


If one issue of “the conversation” is to determine where this country’s millions, billions, raised for breast cancer research have been spent, and where, and how, then let’s keep that out on the table.  This is an important and vital topic for discussion.


But cancer advocates don’t need a deadline to understand that effective treatments for the more intractable subsets of breast cancer – including inflammatory breast cancer and triple negative – are still elusive, and that the word cure itself is often irrelevant for the six percent of women diagnosed every year with metastatic breast cancer, or for the women for whom cancer recurs or spreads to another organ.


It didn’t take a deadline for advocates to understand that breast cancer is “a pretty crappy disease.”3


Support a pledge to end breast cancer by 2020. Who wouldn’t?


Who would be against ending any cancer, not to mention breast cancer, the thief that steals Mothers and wounds sisters?  


The implication there is obvious (i.e., read: big bad pharma, giant corporations, hospitals, etc.) and overly simplistic. Is this the kind of appeal we really need to combat an illness that – as Siddhartha Mukherjee writes - “evolves as we do?”4


Deadline 2020?  Yes or no?  People are smarter than this. The campaign also carries an underlying “if you’re not for us you’re against us” mentality. Changing a conversation is about broadening parameters, getting a bigger table and inviting more participants, not dividing people into camps. It’s an old tactic as far I’m concerned. 


Communication now, with various social media platforms and active virtual communities, is much more fluid and relational. Advocacy must adapt as well.  And above all else advocacy has to be securely anchored in facts.


When NBBC cites the number of breast cancer deaths, as opposed to mortality rates (the norm in public health reporting) a slow derail on credibility begins. You’d think the organization would know better. Playing statistical hide and seek with cancer deaths isn’t the way to move forward.


On the trip home from the conference I opened Emperor of All Maladies again. Mukherjee sees this: Between 1990 and 2005, breast cancer mortality had dwindled an unprecedented 24 percent. Three interventions had potentially driven down the breast cancer rate – mammography, screening to catch early breast cancer and thereby prevent invasive breast cancer) surgery, and adjuvant chemotherapy.”5


Another way:  between 1999 and 2006, incidence itself decreased by 2.0% per year6 overall, and between 1900 and 2006, death rates decreased by 3.2% for women younger than 50, and by 2.0% per year among women 50 and older.


Other statements were just as startling: “In reality, to date, our knowledge of the biology of breast cancer has not been translated into many new therapies to treat it.” What is the ISPY-2 Trial7 all about then, in its effort to accelerate therapies based on biomarkers, or current trials under way with PARP inhibitors in the treatment of triple-negative breast cancers?  You’re left with the impression that the research arena is one of suspended animation.


We can no longer afford to simplify cancer.  The truth, when we keep looking, is not in deadlines or dichotomies but in the economic, social, and emotional cost that society is willing to pay--both in the individual and collective spheres.


Two of the projects that NBCC proposes – a summit on metastatic disease and the development of a preventative vaccine – are spot on.


Consider this: we have a national DNA data base to help solve crimes but no national tumor registry program. If science begins with counting, with the accumulation of data, how can we begin to understand the mechanisms of metastatic disease if there isn’t a universal bank of tissue that can be compared, sorted, and described? 


If it’s possible to solve a 25-year old crime based on DNA extracted from a carpet fiber, then why can’t a small sampling of cells from a metastatic lesion from bone or the liver be banked and recorded that all researchers can access?  Is this about silos or truly solving basic research issues?


Better Screening

Better screening is needed. We all get this. The American Cancer Society gets this. “We desperately need better breast cancer screening tools,” Otis Webb Brawley, MD, ACS chief Medical Officer, says in Scientific American.8  


The issue of what NBCC calls the “mantra” of early detection is far from resolved, for many reasons – ferreting out facts from the data, not assertions.  (A poster abstract at the ASCO Annual Meeting shows that following USPSTF guidelines in a group of African American women revealed that 73% were diagnosed at a later stage than actually observed or would have occurred under ACS guidelines.9)


One last angle that must be included in any attempt to describe the state of breast cancer in 2011:  the push and pull relationship between oncology practice in the country and patient behavior.


Where in the United States a woman is treated, in what kind of practice, the skill of the operating surgeon, accurate tumor analysis--are all critical to the picture even before the changing preferences of women are considered. Within the last decade alone, the rates of contralateral prophylactic mastectomies (CPM) jumped a whopping 150%10 between 1998 and 2003, despite any benefit to long-term survival. In a time when evidence shows that less is more, more seems to better, perplexing as it is.


Drug Adherence

Another problem, that came and went without fanfare, is the issue of drug adherence in prescribed hormonal therapies11 for hormone-sensitive breast cancers. How this will impact the breast cancer picture down the road is anyone’s guess.


And the last unfortunate elephant in the room is the presentation of recurrent and metastatic disease stemming from inadequate treatment of the first cancer. No one wants to go there, and I can understand why. At the same time it is truly sad.  There is a place for messages of early prevention, but there is an even larger one for understanding what to do with breast cancer when you are diagnosed.


NBCC correctly states that breast cancer is a political issue, which it is. Breast cancer is also a deeply emotional one. The breast cancer movement itself often sinks from its own collective story. Survivors can have difficulty separating their personal cancer story from reality; realizing that each and every cancer statistic is not another arrow coming their way.


What I see -- what I saw at the NBBC conference – is an often vulnerable population, shaken by cancer experience and easily frightened, at times unnecessarily.


Let’s hope NBCC tunes into the breast cancer survivor network, and the wisdom that resonates there. “We need more than ribbons, my friends,” Susan Niebur, PhD, known as @whymommy on Twitter, wrote on her blog.12 “We need RESEARCH that will bring about BIG change, more than incremental changes and improvements in the drugs that poison us (but poison the cancer just a little bit faster).”


Within the week following the conference one development after another flowed through my Twitter feed about breast cancer, from a new stem cell finding with potential for triple-negative breast cancers to tumor self-seeding, to a UK discovery13 that identified three genes nest to the estrogen receptor which may influence tumor growth-- specifically drug resistance.


I’ve been sitting with two tables worth of papers. I am new to this. But I do believe I understand fairness. The picture created in “Ending Breast Cancer” does reflect the depth, scope, or passion of thousands of researchers, clinicians, scientists, survivors, and advocates who are working diligently on the front lines.


We don’t need rhetoric to motivate women to get on this bus, nor do we need buckets of pink merchandise to “buy” into an illusion that those pennies per dollar are directly fueling innovative breast cancer research. We need fewer images, less posturing, and more leadership.


On the last morning of the conference, as the topic moved again to some exciting research avenues in metastasis, out of nowhere -- it seemed -- my friend slammed her fist on the conference table, her eyes brimmed with tears.


“I need this now,she said.  “I need these treatments now.” Not next year or the year 2020.  Now.


At the end of the day, for all the words, plenary sessions, and discussions, the conference didn’t have anything new for her, either. Not yet.


If our advocacy and arguments are to make an impact we need to deal with the facts about breast cancer, not with intent to paint the picture worse than it is, or better than it is, but simply the way it is. That is enough.


JODY SCHOGER is a free-lance writer, breast cancer survivor, and advocate who writes about issues affecting women with cancer at http://womenwcancer.blogspot.com



1.  Ending Breast Cancer: A Baseline Status Report.  National Breast Cancer Coalition. May 2011. http://www.breastcancerdeadline2020.org/2020/assets/pdfs/2011-progress-report.pdf


2.  National Breast Cancer Coalition.http://www.breastcancerdeadline2020.org/


3.  K. Frieswick, “Sick of Pink,” Boston Globe Sunday Magazine, October 4, 2009.


4.  S. Mukherjee, The Emperor of All Maladies, A Biography of Cancer, (Scribner, A Division of Simon & Schuster, Inc., NY 2010)


5.  Mukherjee, Emperor of All Maladies, 402.


6.  American Cancer Society, Breast Cancer Facts & Figures 2009 – 2010, 3.


7.  National Cancer Institute. ISPY-2 Trial.


8.  N. Shute, “Beyond Mammograms: Research Aims to Improve Breast Cancer Screening,” Scientific American, may 10, 2011.


9.  ASCO, Annual 11 Meeting. Abstract: http://abstract.asco.org/AbstView_102_82075.html


10.  A. Park, “Study: Double Mastectomy May Not Improve Survival,” TIME Magazine, February 25, 2010. http://www.time.com/time/health/article/0,8599,1968122,00.html#ixzz1MpBsfQXh)


11. J.Schoger, proposal, “Social Media: The RX for Improved Adherence?” http://panelpicker.sxsw.com/ideas/view/7901


12. S. Niebur, Toddler Planet: The Joy of Life After Cancer. Permission from author.


13. S. Adams, “Breast cancer gene discovery ‘like finding gold,’” The Telegraph.  May 3, 2011. http://www.telegraph.co.uk/health/healthnews/8490070/Breast-cancer-gene-discovery-like-finding-gold.html


Elyce Turba, RN, MSN, OCN said:
Jody- having worked in oncology and with breast cancer advocacy organizations for many years, I find the efforts territorial and splintered. Your call for leadership is very observant. What is needed is a leader who can bring the factions together and develop a strategic plan that leads to collaboration and better use of resources. The subcellular level is where the pathways to malignant diseases are found. Unfortunately, when one pathway is found it leads to another prior pathway which needs to be researched. It is not a simple process. Thank you for keeping the discussion going.
Ms. Kate Murphy said:
Thanks, Jody for making an important point. Artificial deadlines almost appear to say that people really don't care about ending breast cancer. The many fine researchers I have met certainly do. Significant progress has been made in early diagnosis and treatment, but we still need to find out how to manage the disease that escapes into the distant parts of the body. It isn't simple and it isn't easy. Waving pink banners won't do it. It takes money for research that is being lost at NCI and for the young researchers who do the basic and unheralded studies that will help us target and destroy some -- and maybe never all -- of the many types of metastatic breast cancers. I am a survivor, but my mother eventually died of breast cancer.
Ms. Jody M. Schoger said:
Laura, I'm glad you commented. My remarks concern the overall impression of the report as a whole, and yes, I was aware that the mortality rates were briefly mentioned on pages 18 - 19. I think we'll have to disagree on what constitutes progress. After losing friends to this illness I know the progress that has been made isn't nearly enough.
Ms. Jody M. Schoger said:
Thanks, Kathi. I appreciate your comment and definitely understand. I don't think a week goes my that I don't hear about another diagnosis in my extended circle, or requests from friends to talk with someone who is newly diagnosed. I'm glad we're working together toward a solution.
Ms. Laura Nikolaides said:
Jody, we are glad you were able to attend NBCC’s conference and thanks for your positive remarks regarding the presentations. We are however, sorry that you misunderstood what was presented in our Progress Report. We stand by our statistics, obtained from the NCI SEER. The decrease in mortality rates was in fact discussed in Mortality and Survival, section 2.5, and the data is presented graphically on page 19.While you seem to imply otherwise, in our report we acknowledge the actual changes in rate and raw numbers. Moreover, our report looks at progress in breast cancer in an overarching context and we address broader issues of breast cancer, such as the lack of impact from screening on the incidence of late stage breast cancer (steady since 1975). We understand that you and others may have a different perspective, but we stand by our conclusion: There has been little progress in preventing breast cancer or deaths from breast cancer, despite the expenditure of significant resources.
Ms. Kathleen Kolb said:
Great column, Jody. I have been sitting with a lot of the info from the NBCC Conference since getting home, to let it settle for a while. Meanwhile, a friend with BC just had surgery to remove a large but benign tumor around her ovary & other organs, probably worsened by Tamoxifen. Another friend with the BRCA1 gene is facing a prophylactic bilateral mastectomy. Her mother died of BC. Another friend has been newly diagnosed. And other of our mutual friends struggle with mets. NBCC made a start at getting our attention, but now we need to get to work & define a plan. I had hoped for more specifics for that from the conference. We'll all keep writing & demanding change, though, that's for sure. I look forward to future columns. Kathi
Ms. Jody M. Schoger said:
I thank you all for your comments and observations. One thing I want to make clear is the distinction between NBCC's effort to bring attention to metatstatic disease and its written, baseline report. We need to move past pink, move past unrealistic expectations (and goals) and try to accelerate science and research in the best possible fashion. That's how I arrived at anchored activism. Alica, Gayle, Catherine - building more leadership and credible voices is part of work. You play an essential role in this conversation. Keep talking, Jody
Katherine OBrien said:
Thanks for raising some excellent questions. I think, like many breast cancer advocacy groups, NBCC does a lot of good. But yes, there is room for improvement. NBCC plays up its Herceptin role. Where are they on TDM-1? Compassionate use? The 2020 dealine, with Space Race analogy would work if breast cancer was ONE disease. Instead, wew are trying to land on every planet in the solar system.... I also am Stage IV--I guess NBCC thinks we can just eke along til 2020....
Dr. Gayle Sulik Ph.D. said:
The goal to eradicate the breast cancer epidemic (i.e., significantly reduce incidence and mortality) with a specific plan is a great step forward, particularly since so much of the pink culture industry is focused on consumption and self-preservation. Though one wouldn't know it from marketing campaigns and media attention, there are many organizations in addition to NBCC that are trying to get past the pink to do meaningful work. It's hard to cut through the inertia created by so many fun-filled breast cancer awareness festivities, and I think that's one thing "the deadline" is meant to do. That said, you're right that many of us know that status quo is not working, and we don't need a deadline to know that things need to change. I agree that, "If our advocacy and arguments are to make an impact we need to deal with the facts about breast cancer, not with intent to paint the picture worse than it is, or better than it is, but simply the way it is." I hope NBCC's plan will do that.
Alicia Staley said:
Jody - Excellent post. I think you addressed some very important issues, mostly the lack of leadership in the breast cancer community. I understand the NBCC's need to establish a "deadline" for a cure; they felt deadlines drove some of the best projects in the past, like sending a man to the moon. Dealing with breast cancer requires more than an arbitrary end point. The community needs a stronger infrastructure and a true visionary. While I applaud the efforts of NBCC, it still falls short. What can we do to help find the leadership team that can help push this movement forward, faster?! Alicia
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