Category Archives: Media

ASCO Clinical Guidelines | Patient Perspective on Breast Cancer Treatment

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As a scientist, publications are everything. Whoever coined the phrase “publish or perish” was not joking. Publishing a first author paper was a requirement of my graduate program, and once you get on the career path in academia, publishing papers is the way to get a grant which is the way to get tenure, which is the way to keep your job. Publications are everything.

(A little background on the publication process: In science, the order of authorship is very important, but this convention is different in other disciplines. The first author is the one who did all the work, or at least most of it, and did the bulk of the writing. That’s who really gets the credit for the publication. The other names are listed in decreasing level of contribution until the last author. The last name is the senior author– usually the one in whose lab the work was done. Scientific publications are peer reviewed, meaning experts in the field are asked to review the paper, give feedback, and decide if the study is worth of publication.)

I got the required publication in graduate school, and I quickly accepted that my days as a published author were over when I decided to leave the lab after my defense. Of course, after my cancer diagnosis, I began writing, though few things were actually “published,” at lease anywhere besides my own blog! And it turns out that self-publishing is a lot less stringent than the peer review process…

But a few weeks ago, I got to add a new line to the “peer reviewed publications” section of my CV! The FDA approves drugs for specific indications, but leaves it to oncologists to decide exactly how they are used in practice. The American Society of Clinical Oncologists (ASCO) publishes clinical guidelines for practice that inform oncologists the best practices and protocols for the treatment of cancer. I was the patient representative on one of these panels where we were reviewing the guidelines that a Canadian group had just released on the best ways to treat early breast cancer patients after their surgery. (Adjuvant therapy is the treatment that follows surgery.) You don’t have to read it– it gets a little heavy, it was meant to be read by oncologists, after all– but I was honored to be included to represent the patient voice as the oncologists in the group discussed the evidence for the best ways to treat breast cancer patients. It was a pretty straightforward discussion since the Canadian group had just reviewed all the pertinent literature. We discussed recent findings and minor clinical differences between the US and Canada, and my comments and opinions were well regarded, even solicited.

Being a part of such a prestigious group is a distinct honor. As a patient advocate, representing the patient voice in such an important forum is a responsibility I don’t take lightly. But as a scientist, having another peer reviewed publication is super cool. I mean, I’m one step closer to tenure! ::fighting the urge to insert winky-face emoji here!::

If you want to check out the publication, start with the abstract. The full text is a little heavier, but available here.

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Celebrating Milestones and Lingering Doubts | CURE Magazine

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I think you all know by now that I’m all about setting little goals and milestones and celebrating them in ways big and small. Some celebrations require a little more forethought, and so I’ve come up with something to celebrate three years cancer free this spring. The picture is your hint, head on over to CURE Magazine to get the details!

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Big Week | CURE Magazine and Scary Mommy

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I know this probably isn’t news to those of you who follow me on Facebook and Twitter, but in case social media’s just not your thing, I thought I’d put an update here, too…

Monday my first post went live on the CURE Magazine’s online community! CURE Magazine is resource for cancer patients, survivors, and caregivers. You can pick up a copy in an oncologist’s office, and they offer free subscriptions if you fill out the included subscription card. I’m not in the print version (yet! One can always dream!) but they approached me a few weeks ago to contribute to the online community of writers, and I couldn’t be more thrilled. Being part of this publication means that people who truly understand my point of view or might benefit from my experiences will be the primary audience, and that’s huge! The piece that I wrote for them this week is a brand new piece– The Indignity of Breast Cancer. Though I’ve never been to New Orleans in March, it’s a little story about how I’ve earned more than 100 pair of Mardi Gras beads the good old fashioned way! (And why I’m totally ok with that.)

Wednesday I was featured on Scary Mommy, a collective blog that’s described as “A parenting website for imperfect parents” and “is intended for people who have a sense of humor, an appreciation for sarcasm, and wear panties that don’t easily get in a wad.” Sometimes irreverent but always funny, I enjoy reading so much of what they feature. They picked up my post from a couple weeks ago– “Ten Things Breast Cancer Taught Me” and republished it this week with a really cheesy stock photo of ladies wearing pink shirts. But still, they published it! Though they may not be my target cancer-y audience, they have a huge readership, so being featured on their site was super cool!

I’ve posted links on the right– the blue CURE Magazine logo will take you to my community page, so as I post more there, it should link to a list of all my articles there. And even though there’s just one Scary Mommy post, I’ll probably leave their signature crown up forever because it’s so cool! If you haven’t read them already, check them out!

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Summer Writing | AACR “How To” Series

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I saw a friend over the weekend who told me she was so happy I’m posting on the blog again. (Hi, Julie!) I have to admit to being a bit of a blog slacker this summer. Somehow, I’d think an eight year old and an eleven year old would be easier than toddlers– they can do so much on their own now, it seems like there should be less for me to do, no? I know all of you parents just a few years ahead of me already know this, but the activities ramped up like crazy this summer and I felt like I was going from one thing to another all summer long! Things like thinking and writing (and showering– the pool counts, right?) kind of took a backseat.

I know that I didn’t post here over the summer, but that’s not to say that I wasn’t doing anything. The bookends to my summer were grant review sessions, one of which required quite a bit more prep than the Department of Defense Breast Cancer Research Program study sections I’ve done before. I spent some time chatting with an early career researcher who has some super exciting ideas, and I’m getting a little closer to figuring out what I want to be when I grow up and how to get there.

One of the writing projects I worked on was for part of a how-to series that the American Association for Cancer Research has on their Advocacy page. I was invited to write a “How To Share Your Story” post for them, and it was such an honor to have my writing featured by such a prestigious organization. For me, seeing my story featured on their advocacy page felt a bit like how I imagine a Broadway star feels seeing their name in lights! I explained a bit about why I started this blog and how it’s changed in the almost three years (gracious, time flies!) since I was first diagnosed with breast cancer. As it’s a how-to series, I also gave a few pointers to anyone interested in sharing their own story. The quick summary: if you don’t want to go the GoDaddy route and pay for a site, there are a lot of free options with varying privacy settings and they’re all pretty easy. Think about your audience when you write, and be yourself. If you want the more detailed version, head over and read the whole thing on the AACR site.

And stay tuned, as my other summer projects go live, I’ll be sure to fill you in! Happy fall, all!

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AACR Annual Meeting Report #2: The Poster Session

IMG_2462.2015-04-20_133455While a very few people are asked to give talks at AACR each year, the vast majority of the science presented at the conference is done by the person who actually does all the work– the graduate student or post doc– at a poster session. It’s kind of like a grown-up science fair, but without all the baking soda and vinegar volcanoes. Literally thousands of people put up a poster on a board for four hours, talk to other scientists about their work, and then take it down so several more thousand people can start all over again in the afternoon. What makes a poster session so great is that you have the opportunity to actually talk to the investigator, to interact, ask questions, make connections. These are great opportunities for beginning collaborations between scientists. During two of these sessions, the advocates had a row to put up our own posters. I would love to see us be able to mix in more with the scientific posters to perhaps get a little better traffic, but it was still a tremendous opportunity to present a poster at such a big meeting.

The poster I presented was a true collaborative effort, put together from ideas from the other ladies in the group at Georgetown. In truth, I was hoping to have an audience of scientists, to sell them on the virtues of including advocates in the research process. Thus, our poster described the credentials and the diversity of our group. The youngest in our group are in their mid-thirties, and we also have members in their seventies, and our members represent many different professions.  I’m the most recent diagnosis, but we also have one (never diagnosed) high risk woman and a couple of ladies who are over twenty years out from their diagnosis. The women in our group have worked very hard to learn an incredible amount about breast cancer; many have attended the National Breast Cancer Coalition’s Project LEAD as well as other smaller educational activities. I wanted to emphasize that not only were were diverse and passionate, but that we are a group of educated advocates. But I knew that there was one thing that would be even more important to scientists than education: funding. In fact, quite a few in our group have served as full voting members as consumer reviewers for the Department of Defense Breast Cancer Research Program, and others have also reviewed for Komen, NCI, and state programs in Texas and New York. No one was too interested in reading our publication history, but they were all very impressed to see that members of our group have served on ASCO guideline review panels as well.  Not only are we capable of understanding some of the science and representing a broader patient population, we have done it in some pretty high profile places!

Let me tell you friends, if you have to present a poster for four hours, this is the kind you want to have. Everyone who stopped by listened intently and was thoroughly impressed by the group that Ayesha, our fearless leader and scientific adviser, has built. Many advocates wanted to know how to start such a program in their community, and, as I’d hoped, the scientists were impressed (surprised, though impressed!) by the credentials our members possess.

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Since the conference was nearby in Philadelphia, I was lucky enough to have some of the ladies from the Georgetown group join me for the poster session. There were definitely times when we had more than one discussion going, so it was good to have extra people on hand to chat.But frankly, having five of us there was even a more impressive display of our commitment to learning about cancer and becoming more effective research advocates. And selfishly, I loved having the opportunity to get to know the ladies better– two hours a month in a meeting with a full agenda is not the quickest way to build a relationship!

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And since we’re talking relationships, it’s worth mentioning that we were lucky enough to have a few VIP scientists stop by our poster.  Robert Clarke, PhD, DSc, is the Co-Director of the Breast Cancer Program at Lombardi, and Ayesha Shajahan-Haq, PhD is the Georgetown faculty member who first dreamed of a group like ours at Georgetown and then worked tirelessly to make it happen. She established the group four years ago, and we owe her a tremendous debt of gratitude. And perhaps even more exciting than presenting my poster in the advocate row at AACR is the fact that it now hangs proudly in the hall of The Research Building (such a fancy name for a place where people do research, no?) just outside of Robert Clarke’s lab. Perhaps hanging there, our poster will finally get a good audience of scientists, after all.

I was privileged to participate in AACR as a part of the Scientist <-> Survivor Program. Read about my SSP experience here.

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The DC Ladies Interview

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Do you read the DC Ladies? It’s a fun lifestyle blog for women, by women, in the DC area.  I love their tagline: the most fabulous women in the most powerful city. So I feel just a little fabulous today to be featured on their site.  It’s my first online interview, and I think they did a great job with it.  Shelley’s questions pushed me to think about things in a different way, so even faithful readers here will probably learn something new, and it is such a privilege to share my story with a new group of readers.  Check it out, and enjoy your holiday Monday!

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Breast Cancer Awareness at the Pentagon | Recap #2

After the morning’s fun un-run, I headed to the Pentagon Athletic Center with a big crew from the clinic to shower and get ready to face the day.  I just love the camaraderie of a bunch of women getting ready together.  There are no pretenses– everyone can complain about their hair as they blow it out, there’s always someone with an eyebrow pencil if you’ve forgotten yours…  After a quick breakfast and a little break, we headed over to the Pentagon Conference Center where I gave my first talk of the day.  Of course, getting my talk from the laptop (which is maybe the oldest laptop I’ve ever seen!) to the screen was a bit of a challenge.  I think it took five of us to figure it out, and the conference center tech guy basically gave up and left us to our own devices before we figured it out.  Somehow it wouldn’t be a power point presentation if there wasn’t a problem with the projector.  (Those who know me well might know that I have a bit of a thing with fonts, so of course they were carefully chosen.  And of course the super old computer didn’t have the same font set, so I ended up with a few things in a rather pirate-y font.  Awesome. I’m sure I didn’t obsess over that and mention it in my talk at least four or five times.)  Once we got it going and I got over the pirate font, it went well.  The talk was open to anyone at the Pentagon, and I was privileged to have the senior staff from the clinic and the head of the Breast Care Center at Fort Belvoir and her chief nurse in the audience, too.  It was a diverse audience, but I think I managed to keep everyone engaged, and there was a great discussion afterwards.

DSC_0005In the break before heading out to the courtyard, I had lunch with the ladies from the Breast Care Center at Fort Belvoir. It was so interesting to share perspectives on patient care, and it was a unique dynamic– since she wasn’t my breast surgeon, I enjoyed being able to talk to Dr. Williams as more of a colleague than in the normal doctor/patient relationship.

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The courtyard event was fun, it was filled with people in pink who were eager to share their own stories.  It was a privilege to speak with so many men and women.

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And then I see this picture.  That’s me, standing on the stage in the courtyard of the Pentagon, being introduced to the crowd by the director of the clinic.  Craziness. I don’t get nervous, and feel like I’m taking it all in stride, but then sometimes I just realize– this is a big deal!

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I gave a quick talk, a little about me and a little about how to reduce your risk of breast cancer where you can and the importance of regular screenings before encouraging everyone to join me for a walk or head out on the three mile run that we skipped that morning.

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We encouraged everyone to walk for twenty minutes.  You know, for their health.  We’ll just not talk about the fact that each lap went through the designated smoking area.  Little victories, you know? ;)

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Oh, and did I forget to mention that I got a major award? OK, that might be overselling it a tad, but I did get a lovely framed certificate lauding my contribution the the Pentagon’s Second Annual Breast Cancer Awareness Campaign and a commander’s coin from COL Pina. Very cool.  If I ever get a real job with a real office, you can be sure that bad boy is going on the wall!

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But really the best part of the day? I got to know some great people.  The clinic staff were such lovely hosts and made me feel like a VIP and part of the crew at the same time.  I spoke with several women who either were going through treatment for breast cancer or who had faced it in their past.  We traded stories and bonded in a way that’s becoming so familiar to me.  Karen tells me that she’s gotten great feedback since the event, and one of the women we talked to has even already stopped by the Fit to Win program at the clinic to start on a more proactive survivorship wellness plan.

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It was such a privilege to get to be a part of a breast cancer awareness campaign that I truly felt made a difference.  There was pink, yes, but I really feel like there was a conscious effort to embrace the teachable moment that the pink provided.  I was able to share some proactive steps a woman can take to reduce her risk of breast cancer, and I was able to incorporate some of the recent data that mammograms are catching cancers earlier.  But I was also able to use my time to remind everyone that there are no guarantees, and despite all the talk of risk reduction, early detection, and even my smile and healthy appearance, nearly 40,000 women will die of breast cancer this year. With so many healthy survivors, it can be easy to gloss over the fact that breast cancer is a serious disease. And while October, in all its pink glory, can get a bad reputation for ignoring the hard parts of breast cancer– the suffering through treatment, what it’s like to live with metastatic disease, the lives it claims– I felt like my October day at the Pentagon was well spent.

Thanks to Natalie at the clinic for the images of the day’s events.
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