Advocacy at #SABCS

Dec 6, 2010 San Antonio: 7:15 am

My mind is stuffed with data - slides, posters and much more after attending the 35th annual San Antonio Breast Cancer Symposium last week, an international gathering covering everthing about the science of breast cancer. 

Conferences like this are a conundrum: there are more sessions to attend and people to see than one person can possibly manage ... yet we know how vitally important the information is for women with triple negative, inflammatory and/or metastatic breast cancer. We all know women whose lives depend on what is happening in the translational research context and Phase III trials. We all want to have the chance to stand up to applaud, cheer and yell. This year there was polite applause. While I keep hearing the phrase - from lab to the clinic - there wasn't a lot for the woman having an appointment tomorrow. That is the truth from what I've studied so far. Knowing what is possible helps us understand how to pinpoint our advocacy.

Here are a few highlights: 

Susan Rafte, Houston

• 34 Years: that's how much time was needed for the first-ever "civilian" moderated session.  Susan Rafte, founder of the Pink Ribbons Project in Houston, moderated a three-part panel on breast cancer survivorship that included presentations on sexuality during and after treatment, the risk of secondary cancers and cognitive dysfunction. Patricia A. Ganz, MD, speaking on the cognitive issue, was a far better bet than the small but attention-grabbing study on chemobrain presented later in the week. Establishing a survivor-led session was a huge advance in advocacy that we want to see continued not just at SABCS, but at ASCO and ASCO Breast. Let patients help, is what @epatientdave in the Society for Participatory Medicine says.  Ditto that!

• Atlas Shrugged: The Adjuvant Tamoxifen: Longer Against Shorter or (ATLAS) study showed that use of tamoxifen for 10 years instead of five provided a 2.8 percent decrease in overall mortality, especially in the second decade following diagnosis. You could hear the collective groans from survivors who have taken the drug. You could hear the collective groans from medical office staff in charge of answering the phones. You could hear the questions about tamoxifen/vs aromatase inhibitors and who to start when and on what from oncologists. In the long run this trial will not change your life; it will add to the wealth of information oncologists have in developing treatment plans for women diagnosed today. With one huge exception: if indeed pre-menopausal women are going to be prescribed 10 years of tamoxifen then an effective survivorship plan that includes side-effect management must come with the prescription. No kidding. What use is the information if adherence in the population under 45 barely approaches 50 percent? This issue itself is bigger than the trial findings. Adherhence is a worrisome trend considering the natural history of ER+ breast cancers and its tendency for "late" recurrence (be sure you know when late recurrence means five or when it means after 10 years - it varies). At some point in THIS life I hope to hear one physican stand up and state the simple truth, "There's no doubt. This is a tough drug to take and we've known this for a long time." 

• Science is Incremental. Breakthroughs are rare. Advances don't arise from a vaccuum. Most  point to the 2005 ASCO presention of Herceptin in HER2+ cancer as the benchmark. "Cancer researchers often toil in a grey mist, a world of indistinct outlines, an oft-depressing, or at least frustrating place," George Sledge, MD, past president of ASCO, wrote in OncologyTimes. Wow. It helps when we understand the researcher's daily challenge; the clinician's hopes.  A basic understanding of how medical progress happens is essential for making sense of SABCS. Without it the symposium would be a very disappointing place. Distinguishing hope and hype, promise or promotion is key.

• Anecdote vs Evidence.  My experience is essential as an advocate and writer. It empowers me as "ears" within the breast cancer community. But my experience is not evidence. It's my story. 

Science in action. Biomarkes w/in HER2+ drawing.

• Moving Forward in HER2+ Cancers.  There was good news here: one year of traztuzumab is still the gold standard. And to see where things are going? Take a peek at my horrible photo above: it gives you some idea of the depth of detail necessary to develop effective treatments. We are talking about layers within an individual cell itself that are at times impossible to fathom. All within one cell.  Plus another discussion on "functional genomics" left me with the impression that it may not be an individual biomarker itself that makes the difference in developing effective treatments but the architecture in which those biomarkers exist, or better yet, the roadmap or pathways the biomarkers populate.

• Avastin:  So long, farewell...or at least, until the drug can be matched with the right biomarker.

• Advocacy: The breaking story as far as I'm concerned?  The photo here, advocates and fellow recipients of scholarships from the Alamo Breast Cancer Foundation.  Betty Summer (L) and Vicky Carr, are part of a group that formed within the conference itself.  This is why advocates attend conferences like SABCS.  These women identified a need in the triple negative breast cancer population and moved forward immediately. Not tomorrow or next week. They went to work that day. They met, planned, thought, and considered the evidence. They found physicians involved in triple negative research and asked tough questions: where is the promise? Where is the hope? Before the weekend was over they were formulating a plan, "drilling deep," as we heard all week, outlining strategic initiatives to address an aggressive and confounding form of breast cancer.  If there's success, and I'd say there was, it will be in watching their story unfold. They are part of the solution. So are you.

There's much more to come.  Thanks for reading,

From Cure Magazine on advocacy:

 http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2012/12/3/Breast-cancer-advocates-a-visible-presence-in-San-Antonio

With thanks to the Alamo Breast Cancer Foundation for the scholarship that made it possible for me to attend the 2012 San Antonio Breast Cancer Symposium.