Who would have thought, ten years ago when I learned of my BRCA1 results, that social media would have ever played a part in my treatment plan. Ten years ago, I had just started working for an online University, and I thought that was crazy enough! But to think that I'd find my doctor, seek referrals, "meet" patients and even plan my surgery via social media channels...the mind boggles.
Today is Social Media Day 2015 (#socialmediaday2015), so I felt it appropriate to take a minute to reflect on my social media journey which has lead me to sitting here in Texas. Because none of this would have come to fruition without it. Let's face it, I was living in Dubai for the critical part of finding my doctor, which ended up being in Texas, and living in Singapore when dealing with insurance, finding lodging and planning the rest of the trip. Medical tourism is a hot topic, and a lot of people flock to Asia for the best of the best...but they're flocking for cosmetic surgery, not reconstructive surgery, so referrals I was getting within the region weren't satisfying my type A needs for perfection.
|By Okky.novianto (Own work) [CC BY-SA 3.0 |
(http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
So, back in 2013, I came across this little group called Beyond the Pink Moon, to which I was invited by a friend of a friend, Lori, whom I had never met, but had becomes friends with on Facebook. There I was, plopped into an online community with admin and author, Nicki Durlester and previvor friend, Melissa Voight; a forum for discussion regarding breast and ovarian cancer, as well as genetic mutations increasing hereditary cancer risk, including BRCA1 and 2. I laid back for a moment, reading all these stories, some breaking my heart, some bringing me tears of joy. This group seemed close knit, they all trusted each other and shared anything and everything. Soon, I was ready to ask some questions. My first interaction was on November 5, 2013; it was my introduction:
Hello! Brand new here. I'm 37, mother to 3 kids and wife. I'm currently an international teacher living overseas. I tested positive for BRCA1 in 2005, and I'm now ready for surgery. I'll be flying to the States for it next July. I'm now going through the motions of finding a doctor, calling insurance and figuring it all out from overseas, which is hard! Hoping for a direct to implant procedure. If anyone has experience with Cigna insurance, please do tell! Thanks!
Well, it was a lady named Laura R. who immediately peeked my interest with her reply:
If you're looking for a doctor, PRMA in San Antonio is great. They take all insurances and help with travel. I just heard they have virtual consults too.
Ding! Virtual consult. I was oversees. I needed someone who could help me through the Internet, and she recommended the four letters that I couldn't ever get out of my head...PRMA. I must have moved quickly (type A) as the next day, I replied to another 'Lovely' with:
I'm in your EXACT position (name hidden)! I just joined the group yesterday. I'm older, turning 37 this month, diagnosed BRCA1+ in 2005. I'm filling out my virtual consult form for Dr. C right now. Hoping I'm a candidate for one step, direct to implant reconstruction! I'll have to wait 'till July as I'm living overseas. Good luck!
Now, how did I know to ask for Dr. C? This is an interesting one. I had many of the ladies PM me, all talking about Dr. Chrysopoulo. I then met dear Wendy on November 6th, where she gave me what I needed to hear, " I traveled a little over 8 hours. I had a one step and was there a little less than a week. We drove." Ding again! Recovery with this procedure would be better than anticipated given my time constraint. Wendy and I continued talking, and still do to this day. All this happened within TWO DAYS. Are you seeing that? Discussions, relationships and referrals, all via a Facebook group.
Well, we all know what happened next. Due to being relocated, my surgery never happened in July of 2014. My next post on Beyond the Pink Moon happened on January 11th, 2015, the day I had been going crazy, starting over, trying to figure out how to have surgery overseas again, and who to pick, knowing Dr. C was still in my mind, for my surgeon. I had all these referrals from ladies for California doctors, but nothing was working out. The Pink Moon Lovelies were so helpful and provided me with so much information. They felt my pain of trying to plan an overseas surgery, without being seen in office first. I had my friend in the US calling these doctors offices for me (time zone issues) and asking all the initial questions for me. It ended all the same, in office consult before they could discuss surgery. In the back of my mind, I kept going back to Wendy and Dr. C. It was then that Laura R's voice popped back into my life with...
Heather, PRMA is fabulous and one of the best! Dr. C is a top notch doctor and you would be in the best hands. Dr. C did my DIEP flap and he did one-step on Wendy. Dr. C is a perfectionist. He's an exceptional doctor. And so caring! There's a bunch of us with personal experience with Dr. C so rest assured you're in excellent hands with him.
Another Lovely wrote:
I haven't had PBM yet, but when I do, it will be Dr C at PRMA. I have flown all over the United Stated consulting with 5 different plastic surgeons. I liked Dr. C the best of every one. He was incredibly compassionate and his results look so great. I think you'd be in fantastic hands.
That was the day I knew, I knew Dr. C was my doctor and I'd be turning my life over to him. I couldn't believe the amount of information I received from an online forum. Patient referrals mean so much to me and so much to many. Just knowing so many women were so happy with their outcome spoke volumes. I had my Skype chat with Dr. C in February and all was good. It was perfect. It would be him. Now, my addiction to social media means I ask a lot of questions, I second guess, I research, I freak out a bit, and then I go back to calm. Dr. C caught me in the middle of one of these cycles when I was second guessing things. I said I was listening too much to other people, Nicki told me to put my earplugs in to which I said "I will" and "I know my surgeon will make me look lovely." Well, I didn't know Dr. C was on the forum. I got the reply, "Yes I will Heather." LOL! My doctor, involved in social media.
Well, over time, I met many, many more BRCA friends via Beyond the Pink Moon and Twitter, like Terri, Tobey, Lisa, Karen, Georgia, Amy and Brandi. There's a huge community of advocates out there sharing their stories for people like me who had no clue where to begin. There are doctors who are willing to chat online, add to conversations patients are having and help educate. It's amazing where social media has come. I'm so glad that forward thinking PRMA is getting ahead of the game, paying attention to what patients want, what we need, really. They are getting involved, listening and learning, and putting it to use.
Happy Social Media Day 2015