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How Social Media Led to My Current Research in IBC Via Twitter and Blogging?

Posted on the 06 February 2013 by Thecancergeek @thecancergeek

In my last post I discussed some of what drives my research and my overall goals. This post I wanted to take 1 step back and share my unusual story with how I got here starting with picking this postdoc. Usually how postdoc-seeking works is that 3-9 months before graduating (if you’re on the ball) or shortly after defending if you’re staying in your PhD lab for a while, you make a short list of PIs who you want to work for. You might have people in mind that you’ve met at a conference or followed their work for a while, or maybe your mentor has some recommendations, or maybe you’re just desperate to move to a city for personal/family reasons and you narrow it down that way. Regardless of how you attack it, you make a list, and then you generally go to PubMed and look at their work, and figure out what it is you want to do in the context of their work. Then you write emails to them with a carefully crafted CV and overview of what you would like to learn/accomplish and why you would be a good fit for their lab …and hope and wait for a response back inviting you to go interview….and if it’s a big famous PI, you might have your mentor call a few weeks later if you haven’t heard back….

Of course, like everything else in my educational background, I had to be the unusual one in my grad program….none of the above applied to me, since I had decided that my top postdoc choice would be in a new (at the time) translational training program at MD Anderson called TRIUMPH. The program not only would allow me to work in any of the program labs doing great clinically-relevant research, but the extra training experiences are unmatched anywhere else in the country. In learning about the program, I realized that I would not have to do the above research into the PIs ahead of time before applying to the program, since I would be accepted (or not) to the program as a whole and then spend the 1st month or so meeting with all the mentors to find a good match. Seemed like an easy decision to apply, especially given the pretty straightforward process.

March 2011-July 2011 = Crazy few months!

A lot happened in the few months between applying to TRIUMPH in March, getting accepted….and moving to Houston in July – lots of travel including 2 back-to-back conferences in 2 countries with entirely different posters, writing my 200+ page thesis in ~2.5 weeks, defending, graduation, big paper revisions …. etc….then literally a day after my defense (yes I have email PROOF), I get word of an upcoming fellowship opportunity through the Department of Defense that the TRIUMPH program director wants me to apply for.

The thing is….it just happens to be due ~3 weeks after graduation, and eeeek what do I even know about breast cancer??? * At first I think, “I need a break, I’ll pass this up this cycle” and “what about all the interviews I would be doing – isn’t this a big waste of time to limit myself to breast cancer” which I had thought (and still think) is a pretty crowded field compared to a few of the other tumor types I thought I might work in.

The counter arguments going through my head included “I do not want to look like a slacker before I even join the program if I refuse nicely to do it” and oh look at how much $ is involved if I did get it**. Eventually I talked myself into hanging out at my favorite Austin coffeeshops  and doing it since I’m a bit crazy and like grant writing anyway, and it would be good experience regardless of getting it….and if by chance I selected another lab but got an offer, I could turn it down (HAHA – such wishful thinking!) So I came down to Houston the next week, met with the director, looked over her grants and papers, and came up with a potential social-media-inspired project with a teeeeensy bit of preliminary data….wrote the whole thing in about 3 days (+ a weekend on the most repetitive attachments ever), got funded, and the rest is history. As an aside, for the 1st few years of grad school I was not that interested in academia because I thought I sucked at coming up with ideas for research….how times have changed now that I realize how much I like to write and think about science


Social Media as Research Inspiration?

So now you’re thinking, how on earth did she get her research idea from twitter? Tweets are only 140 characters of inane updates on what people are eating or doing, right? NO NO NO!!!. You see, behind those little 140-character status updates is a person (usually!), and there is a huge range of twitter content. Indeed social-media savvy folks use twitter for productive purposes, and frequently they also have a website listed in their profile, as well as relevant key words so they can be contacted by like-minded folks.

It turns out that as an early adopter of most technology, I joined twitter in early 2008***. But after not really investing much effort into it, I didn’t really see the point, since I wasn’t getting a lot out of it. (This is still a common theme I hear when I try to convince my IRL friends about the benefits of twitter) Anyway…I ignored twitter for more than a year, maybe close to 2 years. I didn’t even log in. But then something made me try again more seriously to follow more people and engage in conversations to see if anything worthwhile would happen. In the early days, when my twitter handle was @flutesUD, I looked for interesting people to follow by doing searches for terms like “cancer”, “research”, “science” “flute”….One of these people that popped up in one of the general science-y searches was @whymommy, (Susan Niebur) who I credit with being the inspiration for my major research direction. However, had she not had a blog, I may or may not have actually followed her and certainly wouldn’t be studying IBC or likely even know what it is.

You see, Susan was an IBC patient who blogged not only about parenting and life at her blog but her journey with IBC. I’m sure I’ve mentioned that IBC is a rare, but highly aggressive form of breast cancer that unfortunately receives very little press either in the public media or even in the scientific literature – hence I had not even heard of it prior to coming upon Susan’s blog.

Over a couple of evenings I decided to read her entire blog archive to really understand it, and also followed all of the links on her really helpful IBC links page. Clearly because of the dearth of good quality information available at the time on the internet, Susan had a passion for providing educational content and outreach to fellow patients, and in my view did an outstanding job of this. Through exploring her blog and the other sites, I realized that not very much is known about the biology of this terrible disease that presents and behaves very different clinically from “regular” breast cancer. In addition since patients with this disease don’t have many therapeutic options beyond standard chemotherapy, mastectomy and hard-core radiation, I realized that something must be done to help patients such as Susan (who was fighting her first recurrence at that point)…and thought it might be a good niche to get into, given that I also followed the MDACC IBC clinic director on twitter (@teamoncology). After a few back-and-forward emails with Dr Ueno discussing my idea, I had him lined up to be my co-mentor on the grant to help with the clinical side of the project, and to establish feasibility of the work, since nobody else in my lab works on IBC.

To come full circle on this story, it saddens me greatly to say that last year this week, unfortunately Susan passed away after a tough battle with IBC recurrences (as is unfortunately still so common in this disease). I started this post back then as a tribute since I regretted never leaving any comments on her blog to let her know the impact of her posts, but embarrassingly the first draft was too unwieldy and needed a lot of pruning and focusing. In between all my long hours in the lab & program requirements, it got tossed aside (& lost on my stolen laptop). It’s fitting however a few days after a great twitter chat (#bcsm – on Monday nights) that I post my story to thank all the patient advocates and health bloggers for writing and sharing your stories on social media. Many of you might never know the real reach of your writings even long after you post them, but please keep on doing them as long as you are able to.


* This is known as imposters syndrome within academics. It’s pretty common.

** not that I would see any extra $$$ directly, but it does pay for more of my research than pretty much any other postdoctoral fellowship would, and allows me a few extra freedoms

*** Yup, nearly my 5 year twitter-versary on 3/16/13!

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