Tuesday, December 11, 2012

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.

20 comments:

Katie Ford Hall said...

Thank you for this thorough and thought-provoking summary, Jody. And for your tireless advocacy. And your eloquence. And that cute dog you have. :) Seriously, thanks for dedicating your life to moving this forward.

Katie

Jody said...

My dog is darned cute and a total nut case since I was gone close to a week.

And thank you for your comment - I learned so much more than I ever felt possible and feel it's imperative to pass it on:)

Jms

Alicia C. Staley (@stales) said...

Jody - This is an amazing recap of this important event. You've inspired me to plan NOW to attend next year. There's so much information for breast cancer survivors to review that comes out of this conference. Thanks for taking the time to really shed some light on the key take-aways. It would be easy to get lost in this flood of info. I've learned so much from the tweets and posts you shared through out the conference. THANK YOU for this amazing effort to share with the breast cancer community.
-- alicia

drattai said...

What an incredibly educational summary of a very complex scientific meeting. Your ability to take complicated information and put it into proper perspective makes you a huge asset to the breast cancer community. Now please take a well-deserved break - even if it's just for a day or two!

carmen2u said...

Dear Jody,

For a jam-packed scheduler that I am, I REALLY appreciate your summary and highlights. What a generous service you perform! Thank you. I will be sharing your blog with clinical folks I am meeting at UNC---they need to read you.

Cheers,
Carmen

Nancy's Point said...

Thanks for the great synopsis. My mind is spinning just reading this. Thank you for attending and for reporting back to the rest of us. I look forward to learning more. Thanks again.

a4bc said...

This is an exceptional summary of the SABCS. Thank you so much for all that you are doing to promote advocacy.
Susan

Lara Huffman said...

When I read about the ATLAS study, I felt like I had been punched in the gut. I couldn't even last more than 6 months on Tamoxifen. I'm going to give it one more go, but I'm not optimistic. 10 years seems like a lifetime, and when you're in your 30s and might want to grow your family or even start a family (like 32 year old me), the idea of 10 years is just heartbreaking.

Abigail F Shipley said...

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lisa adams said...

thanks for this. Wish we had more results on metastatic patients, treatments for mets, etc. People wonder why we don't have a cure... it's so complicated. I would love to come to one of the conferences. Maybe someday... thank you for all you do!

Jody said...

Thank you all for your comments - and Lisa, much discussion w/in advocate community about advocacy for better understanding of metastatic disease. CJ Cornelius, of Metavivor was there working with doctors/researchers, as was (and I have temporarily forgotten her name) of the Metastatic Breast Cancer Network. This is so much of the work that happens behind the scenes.

We are all working hard on your behalf, and yes, I can't wait until you will be able to join us at SABCS and ASCO Breast. We need you:)

xxoo
jms

Also - when all of you see a "comment removed by moderator?" Then it's spam. I never deleted comments if someone disagrees with me or points out something I"ve missed.

That's why we have these conversations.

Gregory Dennis said...

Genomic testing for breast cancer is getting better, helping to prevent unnecessary chemo and also better identifying the subtype. Here's the summary of a scientific poster from SABCS:

http://www.newswise.com/articles/view/596629

Beth L. Gainer said...

Thank you for such an informative post, Jody. I am so glad that finally there was an advocate-led panel. And now I'm sharing this post on Facebook and Twitter!

The Accidental Amazon said...

Such a relief to read a rationale summary of the news out of SABCS. I so appreciated your status reports, the voice of reason against a backdrop of silly hyped headlines, during the conference itself.

Yes, research is incremental, tedious, and studies have to be designed in such a way as to take something very complicated and make it very simple, so it can be measured. Doing research in grad school was an eye-opener in this regard.

There should be more advocacy involvement at these types of conferences, though. NCCN had a whole conference at the end of November on patient advocacy. I was disappointed not to be able to go, but I'm hoping they will have another. When they publish the transcript, I will post it for sure. Their conferences bring in research and apply it to the treatment context, as they are aimed at clinicians across the whole spectrum of care. Hope to go to one of them in the future.

We need advocacy at every turn.

Now, I hope you have some time to enjoy running about with Katie.

xoxo, Kathi

elizabeth said...

This is really great, Jody! Thank you for the recap. It's so hard to capture everything that's going on during the meeting if you're not there. I hate that I missed you, but hope you'll consider going again next year. Enjoy the downtime (You have downtime now, right?)

Julie Goodale said...

Thank you for this recap, Jody! Will post this on the Life-Cise FB page - such a clear, insightful roundup.
Julie

Debbie said...

Awesome as always Jody. Thanks for your concise and understandable report of what you heard there. I feel so comforted knowing you and other advocates like you are out there to help people like me decipher all the information. Keep rocking and rolling my friend.
xo Deb

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