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Anchored Activism

Issues affecting women with cancer

Monday, October 13, 2014


Rachel would have loved this. And Susan. Lois Ann. Bear. Della. Donna. And the hundreds of metastatic breast advocates whose voices have been claimed by this disease, which accounts for 40,000 deaths every year. Since 2005 alone more than 202,000 people have died of metastatic breast cancer. This is twice the size of the community in Texas where I live. 

         Work these men and women started was affirmed today with the publication of a 132-page report by the Metastatic Breast Cancer Alliance (MBCA), a 29-member coalition of breast cancer nonprofits, individual members and pharmaceutical companies established exactly a year ago today. At its launch last year MBCA Alliance Director Marc Hurlbert promised a landscape analysis of the metastatic breast cancer field, its research, gaps and needs. They have delivered. 

          “Changing the Landscape for People Living with Metastatic Breast Cancer” is well written, concise and direct. It states facts and findings clearly. For the first time since I was diagnosed in l998, there is an attempt to identify the needs of metastatic breast cancer patients as it affects them on a daily basis as well as the gaps existing in the understanding and treatment of the disease itself. 

           Some of the gaps are daunting. Although many individual findings aren't new the collective impact is powerful. A lack of understanding about the natural course of breast cancer.  No accurate way of recording the number of recurrent and metastatic cases. A "me too-ism" of copycat clinical trials. In an age of abundant information, the difficulty metastatic breast cancer patients face in finding the right information at the right time.

           One of the report's many unique contributions is a revealing analysis of metastatic breast cancer research, including a two-month sampling of clinical trials and another of grants from 2000 through 2013. Interviews with key opinion leaders, as well as a description of how those individuals were identified, are included. 

          The trials and grants are categorized using two different systems, Douglas Hanahan and Robert Weinberg's “Hallmarks of Cancer, which describes how cancers developand Patricia Steeg's Steps of Metastatis, the five-step, arduous process by which cancerous cells leave the original tumor site, enter the blood stream or lymph system, and then go on to colonize a new area. For this scientific research chapter alone, Changing the Landscape deserves merit. In categorizing the trials and grants, areas where research is lacking stand out loudly. This thorough charting will focus essential dialog between researchers, advocates, and industry.

          We all know more research is needed in metastatic breast cancer. But I've always wondered: what kind? This report can start a conversation based on evidence. That is the only place to start. 

           Scientific research on MBC is only one of five areas of inquiry. Other topics investigated include the quality of life of MBC patients, families and caregivers; information and support services provided by MBC Alliance members; MBC epidemiology; and public awareness of MBC. In each area existing gaps were identified and challenges noted. In each area the writers pull no punches. 

         Unlike many attempts to minimize or "normalize" an incurable disease, there are no bland generalizations or lip service to MBC as a "chronic" disease patients can learn to live with. In short, the report makes clear in many ways that 20 years of building awareness about early breast cancer has left the needs, understanding, and treatment of metastatic breast cancer patients in the dust. Twenty years of awareness has helped construct a medical system dedicated to the identification and treatment of early cancers without consideration for the "other 30%." 

         The authors even turn the spotlight on alliance members collectively, noting that, "Breast cancer campaigns have heightened awareness yet have propagated unexpected misinformation" to "Campaigns with a focus on 'the cure' distract from a research agenda to increase the quality and quantity of life for MBC patients." Both are accurate and appropriate. 

Had the authors mounted a defense about the prior emphasis on early detection, the report's credibility would have been severely strained. As it is the tone is just right, an acknowledgement that this is the state of metastatic breast cancer as it is now. We cannot go backward. We can move forward with knowledge.

Here are some -- just some -- key observations: 

  • Scientific research: there is a paucity of research in MBC control, outcomes, and survivorship. 
  • Scientific research: metastatic research funding accounts for just 7 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by major funders from North America and the UK. The distribution of funding (mostly basic research) has not changed much in 10 years. 
  • Quality of life: more than 150 peer-reviewed articles were studied. A significant number of patients with MBC experience multiple symptoms and side effects. Many are not receiving the help they need to address physical symptoms, side effects, and emotional distress. 
  • Quality of life: the needs of minority and poor populations living with MBC have not been fully addressed in research surveys. Minority women are underrepresented in clinical trials, research surveys, and Internet support groups.
  • Information and support: information is seen as a primary need by 75% of the MBC community.
  • Information and support: despite what may seem to others like an overabundance of information about breast cancer, “persistent gaps in information include detailed information on the latest treatments, including side effects and quality of life; palliation; advanced directives and end of life care."
  • Epidemiology: The prevalence and incidence of MBC is literally unknown. The number of women and men living with MBC are "creative estimates." The National Cancer Institute’s SEER data base measures only the primary diagnosis, primary treatment, and death. The only metastatic cases recorded are the five percent presenting with metastatic disease. Recurrent disease and/or a metastatic diagnosis are not registered. The survival disparity between black women with MBC and non-Hispanic whites with MBC appears to be increasing and the reasons are not clear.
  • Epidemiology: the natural course of metastatic disease is not well understood, despite the fact that the bulk of scientific query into breast cancer for the last decade has been in "basic research." 
  • Public Awareness: a focus on "fighting" breast cancer has led to the dominance of an identity that masks the reality that women with early stage breast cancer can and do develop metastatic disease 
  • Public Awareness: adults surveyed felt that breast cancer in advanced stages was curable and that those whose cancers metastasized did not take the right medicines or preventative measures.  

Action items urged in the report include having:

  • More multi-institution trials. 
  • Tissue banks containing both primary and metastatic tumors. 
  • More research on the biology of metastasis. 
  • New endpoints in clinical trial design that reflect the reality of metastatic disease.
  • Better communication among patients, caregivers, and providers.
  • Expanded design, content, and delivery of information needed by MBC patients (up to date treatment information, clinical trials, side effects).
  • Investigation into critical issues: the optimal treatment of MBC. "It is imperative that the use, effectiveness, and impact of MBC treatments on the overall MBC population be understood."
  • Broaden the understanding of health care providers in discussions about treatment, quality of life, and palliative care.

       “Changing the Landscape" has positively and irrevocably altered breast cancer awareness month for me to something far more significant. The report sets the stage for future advocacy that is broad enough for wide participation yet focused in critical research areas. The Alliance has established leadership in an area that needs both leadership and continuity. The breast cancer community as a whole has not been widely known for its camaraderie. How the Alliance will interact with its many other stakeholders isn't clear right now and I still have many questions. But what a foundation this is. Read the report. Then, the next time you find yourself talking with someone about the complexities of metastatic breast you can amplify your comments with this report. It makes the need for change in breast cancer unavoidable.



(1)  American Cancer Society. Facts and Figures

(2)  Metastatic Breast Cancer Alliance (MBCA): Changing the Landscape for People Living with Metastatic Breast Cancer. October 13, 2014.  

Friday, September 21, 2012

MD Anderson doesn’t make announcements. They make events.


Today’s news conference unveiling “Moon Shots,” a bold, $3 billion initiative directed at “dramatically improving” survivorship and reducing mortality in eight different cancers, did not disappoint.

 The evocative confidence of America’s space program, in a week that marked the 50th anniversary of President Kennedy’s famous speech and the last flyover of the Endeavor across Houston, was unmistakable.

If the imagery was on target to spell hope, so was the action-oriented attitude and language. Instead of the academic mantra of “publish or perish,” the motto underscoring the Moon Shots program is that discovery isn’t everything. Action is, and so is "upending the emperor of all maladies," as MD Anderson President Ronald A. DePinho, MD, put it.


MD Anderson's  “disruptive paradigm” brings six cross-functional teams together to address specific milestones and decrease mortality in acute myeloid leukemia/myelodysplastic syndromes, chronic lymphocytic leukemia, melanoma, lung cancer, prostate cancer, and surprisingly, triple-negative breast and serous ovarian cancers, two aggressive diseases with shared characteristics.


The global cancer burden?  An estimated 100 million are expected to die of cancer in this decade.

 At the most elemental level, Moon Shot teams will put existing knowledge about the molecular mechanisms to work. Gordon B. Mills, MD, PhD, Chair and Professor in the Department of Systems Biology and head of the breast and ovarian cancer team, explained that efforts at reducing mortality in these cancers are more than genetics.


“We are working beyond the science and applying the knowledge that already exists to put it all together,” he said. Within five years the team seeks to validate new ways to stratify at-risk women and develop other protein-based biomarkers (like CA-125) to form new risk-assessment models, as one example.


At a deeper level, each Moon Shot team, he explained, will benefit from a shared infrastructure of 12 high-quality, science and technological platforms that are in development now. These range from clinical genomics, to a center for co-clinical trials, to massive data analytics and patient omics, and detailed analysis of genes and proteins from biospecimens. What this means is that a sample of blood or tissue can be extracted, profiled for mutations, the data analyzed, applied and translated back into the clinical setting in a more streamlined and efficient manner.


The cancers targeted were selected by a panel of 25 internal and external experts led by Frank McCormick, PhD., Director of the University of California, San Francisco Cancer Center and President of the American Association for Cancer Research.


Doug Ulman, Chief Executive Officer of Livestrong, said the ambitious program is re-organizing the way cancer is tackled, from prevention, through early detection, treatment, and survivorship. “I have great respect for those who put audacious goals out there for us to strive towards,” he said. “The impact of this new plan could be transformational.”


In a climate of funding uncertainties and diminished expectations, when only eight percent of grants submitted to NCI are funded, new ideas are to be applauded. “We’re at a time when we have new knowledge, but the only way we’re going to make dramatic progress is a large-scale concerted effort,” Otis Brawley, MD, Chief Medical Officer and Executive Vice President of the American Cancer Society, told the Houston Chronicle. He noted in that article that although he had concerns before that the program might “overpromise what it could deliver," the final mission statement is "very appropriate," and that “if MD Anderson is the one to lead that effort, I’ll praise them for that.”



Wednesday, August 3, 2011

A few years ago ophthalmologists noticed that patients treated with Lumigan, a glaucoma medication, started sprouting the kind of long, fluttery eyelashes popular in Harlequin romance novels.  By late 2008 Allergan, the creator of Botox and the immovable-forehead look for middle-aged women, reformulated the prescription, obtained FDA approval, rebranded the product, and introduced Latisse, for the treatment of ‘inadequate’ eyelashes.  


With the able assistance of actresses Brooke Shields and Claire Danes as “spokespeople,” Latisse went on to generate sales of $73.3 million in 2009 alone, possibly more than its predecessor.


If I were strictly an advocate for women’s issues, I’d write about Latisse in between observations by Barbara Ehrenreich (millions of dollars for longer eyelashes? in this economy?) with cartoons from

Liza Donnelly, whose work is frequently in The New Yorker.  Writing as an activist, on the other hand, the goal would be for you to take action by the time you finished reading this, lest I come knocking at your door. Interested in outreach?  We would pass out Latisse samples to every female cancer survivor at walks and runs across the country, shoot a video of the before and after lashes, and upload and distribute on Facebook, Twitter, and Google+. 


Even if overly simplified, this illustrates the multiple directions one SMALL bit of medical information can take.  When this happens with information about cancer -- information that people need to make informed and essential medical decisions -- the hackles on my neck go straight up.  I see this happen daily – in news articles, from television news,  TV “Docs,” to thinly disguised sales people with medical degrees.  Some of it isn’t pretty.


Medical professionals need to understand that a person’s general knowledge about cancer and being diagnosed with cancer are entirely different experiences.  Almost to an individual the reaction to a cancer diagnosis is one of shock, dismay, and fear.  From that moment on the survivor must determine the best possible path through complicated information, competing hospitals, through new medical terms (not to mention spelling them) -- and during a time when the stress of a significant life disruption is at an all-time high. 


It’s not as if the survivor can’t find information.  The challenge is to find the right information, at the right time at the right moment. 


What many survivors may not even realize is that local hospital website will include every detail about its services, but certainly not about the availability of X & Y therapy down the street, unless he or she asks. The problem is that survivors can’t ask about something they know nothing about. 


Social media, with its immediacy and interactive abilities, offers one avenue through the process, but I think it’s probably more helpful for support AFTER treatment decisions have been made.


People are racing to build apps for patient navigation, but from what data?  What model?  If you even pop the phrase “patient navigation” into a conversation you might surprised by the variety of responses.  


In the interim the oncologist’s time grows more harried.  Nurses are rushed, and essential discussions about treatment are scaled into forms that transform nuance into data.


Watching all these trends, listening to all the arguments, the advocates, and occasionally the clamor, brought me to what I term ‘anchored activism’ for people with cancer.  The need increases by the day. Our population is not growing any healthier and educational levels are declining, especially where I live in Texas. 


Please stay tuned, because this discussion is just beginning. 

Wednesday, June 29, 2011

Early this afternoon the Oncologic Drugs Advisory Committee (ODAC) of the FDA unanimously voted to withdraw its approval for Roche/Genentech’s Avastin® (bevacizumab) for the treatment of breast cancer. The panel's decision will now be taken under consideration by FDA Commissioner Margaret Hamburg, MD, who can either support the committee’s vote or reject it in a final ruling.


The committee specifically voted on whether or not Avastin is (1) safe, (2) effective, and (3) upheld in the treatment of metastatic breast cancer


The answer was an unequivocal no.


The process has not always been easy to understand.


First, there was the issue of accelerated approval, granted by the FDA in February 2008. In a proposal submitted by ODAC and Genentech, "progression-free survival" (PFS) instead of "overall survival" (OS) was introduced as a primary (my emphasis) end point in the use of Avastin in combination with paclitaxel for the treatment of locally recurrent or metastatic HER2-negative breast cancer.


That decision in and of itself was controversial, with committee members voting 5 to 4 for the accelerated approval.


Accelerated approval was based on one study, E2100, which, surprisingly enough, was not "originally designed for FDA approval." In that study Avastin added to paclitaxel resulted in a 5.5 month progression-free survival.


But a number of factors seem muddy now, including the fact that the trial was "open label," where no additional information on concurrent medications is gathered. According to an editorial in the New England Journal of Medicine, both safety and toxicity profiles were incomplete "...since there was no required collection of data on serious adverse events in the control group."


This doesn't make sense to me.


Then, as part of the accelerated process, Genentech was then obligated to pay (support) for additional studies to further demonstrate the clinical benefits of adding Avastin.


In 2009 preliminary data announced at the ASCO Annual Meeting resulted in glowing news reports that one of the studies, RIBBON-1, showed a significant improvement in progression-free survival and confirmed that bevacizumab could be  an important component of initial chemotherapy for metastatic HER2-negative breast cancer.


Not only did two different trials fail to reproduce the original 5.5 month difference but serious, significant side effects were reported.  


By last summer the committee unanimously voted (12 to 1) to remove treatment for breast cancer from the Avastin label. 


When the FDA announced its plan to withdraw approval in December Genentech appealed. This brings us to the hearings that have taken place for the past few days.


Live hearing reports  from J. Leonard Lichtenfeld, MD -- @DrLen -- of the American Cancer Society via Twitter and his signature blog posts have been terrific. Since then Sally Church (@MaverickNY) put up a blog post with a wonderful list of resources, and this morning Katie Ford Hall (@uneasypink) posted a helpful explanation of PFS and OS to help survivors better understand this issue. 


There is no doubt that this isn’t the last of the discussion.


But I deviate from what others can explain far better than I.  At the end of this day, all things considered, I now have more questions than answers:

  1. How did this get off the ground and stay there?  While I understand accelerated approval based on very positive findings, I don’t understand that when the trial on which that approval is based wasn’t intended for FDA approval in the first place. Am I missing something here?  So the committee – nine people – put into motion the addition of Avastin to chemotherapy based on a trial that wasn’t about drug approval.  OK. And that accelerated approval was granted without verifying both safety and efficacy in the first place. Someone explain to me in very simple terms why this was a good thing. I sincerely want to know.
  2. The money issue. Others have written that the ultimate decision wasn’t about the cost of the treatment. I agree there. That is a moot point in comparison with the evidence presented.  But isn’t it very much about the money when a pharmaceutical giant undertakes (funds) an accelerated approval process for a drug that brings in something like $6 billion a year.  Is anyone talking about this piece of the puzzle?  We all know that none of this heartbreak would be taking place if we were talking about soy beans, for example, or aspirin.
  3. Yesterday I tweeted three different take-aways from the hearings that still hold:      

           --  We need to separate testimony from evidence, no matter how painful;

           --   We need to face the difficult truth about metastatic breast cancer and the need for treatments that prolong live with a low-risk profile and, 

           --   Learning about (and identifying) the subset of women that Avastin HAS helped. Can a specific biomarker be identified and explained so others can be helped? I trust Genentech/NCI is studying them?  I do so hope.


In the final analysis it is impossible to write about this without thinking of my friends with metastatic breast cancer, and friends whose lives I still mourn. They are the people I serve. They deserve better than this.


People with cancer deserve better…better science, better safety profiles, better clinical trial design. 


It wasn’t even a month ago that I sat in Chicago when the results of Phase III trials completely turned over earlier, positive results in a proposed treatment of triple-negative breast cancer. Here we go again, I thought, watching the Twitter stream both yesterday and today.  


It also makes me angry. We can be dispassionate about data, yes, but not about the toll that data represents to women with metastatic disease.


Much went wrong here.  We all need to be cognizant of the pressure in every sector of the cancer arena, from the pain of patients and their families to the constant tick of Wall Street to the desire of any scientist/researcher/physician compelled to help their patient. 


And in all of us: the ambition to be first…the first to publish, receive the most innovative treatments, the one to find the holy grail unwinding cancer’s mysteries. All of us need to understand the pressures and go back to the drawing board.


I well remember the work of Judah Folkman in angiogenesis and my “wow” moment of hope reading about him. I still maintain that hope, even though these current events and the continued suffering of women with metastatic illness kicks it repeatedly. 


I can deal with that.  We need to work through the tears and rise above them.  And do better.  We must do better.   




Wednesday, May 25, 2011

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 Report”1  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.




  1. Ending Breast Cancer: A Baseline Status Report.  National Breast Cancer Coalition. May 2011.
  2. National Breast Cancer Coalition.
  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:
  10. .  A. Park, “Study: Double Mastectomy May Not Improve Survival,” TIME Magazine, February 25, 2010. 
  11. J.Schoger, proposal, “Social Media: The RX for Improved Adherence?”
  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.