Breast Advocate App

As a patient advocate and a Previvor, I'm so excited to be a part of this announcement of the Breast Advocate App.  

From https://breastadvocateapp.com/

Back in 2004, I had VERY limited options for connecting to research, people and options when I received by BRCA1+ results.  I didn't have the luxury of being able to reach out to an extensive group of doctors and women to ask questions, seek opinions and benefit from shared decision making.  I lacked the knowledge and feeling of empowerment I needed.  I think that is why I waited so long to make any decisions about my high risk surgeries.

In 2013, I joined a group on Facebook called Beyond the Pink Moon, which was, at the time, an International private support group for women who are high risk, Previvors, Survivors and supporters.  The group was amazing in sharing stories, supporting each other and sharing some research based evidence.  It was in this group that I finally found the doctor I'd use for my surgery, because of how many people were talking about his work and their satisfaction.  That was exactly what I needed. 

Fast forward to 2015, when I was finally planning my surgery.  Beyond the Pink Moon had grown into an all encompassing network of patients, supporters and medical professionals, all working together to help anyone and everyone make the best decisions for themselves.  At the same time, my Twitter network was growing and growing, connecting more patients, supporters and medical professionals.  The "Shared Decision Making" network was amazing and becoming a norm, quickly.  No longer were people stuck with one doctor making all the calls and leaving patients with no other information, references, options or input.  It was increasingly evident that patients needed each other, they needed to ask questions from multiple sources and they needed to come to decisions with all the information possible.

Now, I'm so happy to say, that the answer to my one wish during all of this, is coming to fruition.  An App is in development, where everyone can get research based evidence, surgery and reconstruction information and options, expert input from a network of highly regarded doctors (including my very own Dr. Chrysopoulo), and a support network of other people walking in your shoes, no matter what part of the journey you're on.  The amazing part, is while this App is in Beta, YOU have a voice.  Sign up and tell them what YOU want in an App. What would have or will help you in your journey?  This App wants to be the resource for connecting our large community and allowing patients to feel empowered with knowledge and resources, no matter what decision they make.

 from https://breastadvocateapp.com/

Please share this news with anyone and everyone who has been searching for more information, support and community in what can be a very difficult and lonely journey.  

PRMA Testimonial

I've given a lot of information about PRMA and Dr. Chrysopoulo via this blog throughout my journey.  Please read and view my complete testimonials, here in one place.  If you have any questions, please don't hesitate to contact myself or Courtney, the PRMA Patient Liaison.  Long distance travel should not be a factor in preventing you from going to the best.

PRMA One-Step Implants with Alloderm

Testimony 

Read my story about coming to terms with BRCA and deciding on prophylactic mastectomy at PRMA.

Traveling 9000 Miles for Breast Reconstruction

 Read this blog post by PRMA patient liaison Courtney Floyd and watch my video testimony.

Contact us via Twitter too! 

Courtney Floyd @diepflapbreast
Dr. Chrysopoulo @mchrysopoulo
Heather @expattravelmom

Social Media is Bridging Gaps, Helping Patients Make Decisions

I get asked, a lot, about why I'm so overly open on a very public blog.  People in my life wonder why I'd share intimate information with the world, with people I know nothing about.  I write candidly about the ups and downs of my recovery, the painful childhood memories of dealing with my mom and cancer and even share personal photos.  My answer?  Because someone out there is going to feel as lost as I did going through this experience, and if I can tell the story in real-time, as I'm going through each step, its bound to help someone.  Social media can be a gift, if used the right way.  It can not only be a tool to get information out to others with like interests or sharing your own personal and professional knowledge, it can be used to help people cope with whatever journey he/she is going through, seeking answers they just can't find in medical journals.

Case and point.  Last night I received the most lovely direct message via Twitter which assured me, for the first time in my seven months of blogging, that I'm doing this for the right reasons.

I don't mind putting myself out there...reality is, we're in the information technology age, and I might as well use it in a productive way, not wasting my time.  I'm only one small drop in the ocean of Twitter.  You'd be amazed to see how many patients are online seeking comfort, advice and knowledge from other patients and physicians.  For someone looking to have their hand held through a journey like mine, implant reconstruction after a BRCA diagnosis, I'm here.  If she is a mother of children wondering how to tell them of her BRCA diagnosis or upcoming surgery, I've written about that.  If they just can't make the decision between implant or DIEP, they can read my take on my surgery and then hop on over to my friend @6state, DIEP extraordinaire.  If she's looking for a closed and private support group, she can seek out @NickiDurlester.  If she wants to know how I chose my surgeon, @mchrysopoulo, and why I'd recommend him to anyone, even my own children, I've explained it plenty.  I'm putting it all out there because someone will have those questions, they will seek them out, and it's not their primary healthcare physician they turn to first...it's the Internet.  But its not just us patients advocating online.

As a result of my recent journey, I've been very fortunate to get involved with some pretty amazing doctors on Twitter; doctors who are putting themselves out in the public eye, hoping to share knowledge with not only other physicians, but patients too.  They are providing a wealth of information regarding breast reconstruction, both from the scientific and the patient points of view.  A bridge is forming, connecting the wide gap between the doctor and patient.  We're all learning from each other, supporting each other and trying to change how medical decisions are made.  We're seeing a more socially responsible healthcare system.  Patients are feeling more supported, heard.  The same patients who read my blog or tweet with me, are also tweeting with these doctors and asking questions.

This movement, gaining momentum over the last couple years, is called Shared Decision Making (#shareddecisionmaking.)  

Shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences. http://bit.ly/1qKkl8S

Doctors being on social media platforms, ranging from Twitter and Facebook to Instagram and Pinterest, are providing patients with many different points of view.  They are sharing research, data, articles, photos, charts, live tweets from conferences...and patients are soaking it up.  We want to be well informed before walking into our own doctor's office.  We want to have a say, ask questions, get opinions.  And the beauty is, doctors are getting it.  They are listening, they are having conversations and they are aware that the person sitting in the chair in front of them might as well be their daughter, mother or wife.  A personal interest in patients is happening.  Doctors are beginning to feel the pulse of patients around the world, via social media.  Patients are getting a lens into the medical world.  It's a win-win. 

I hope that as time goes on, this sharing of knowledge via social platforms gains momentum and trust.  There are skeptics out there, people who feel healthcare discussions don't belong on social media streams, let alone their own doctor.  I'm here to say I disagree.  If you have the right doctor, if you've done your due diligence, you've hopefully found a doctor who understands patient privacy and remains professional online at all times.  The skeptics will hopefully learn to trust this emerging online healthcare system and see all the benefits outweigh the negatives...if any.  If you're ready to join us, we welcome you with open arms.  

Hashtags to follow: #shareddecisionmaking #breastreconstruction #plasticsurgery #brca #SoMe

Twitter users to follow to get you started: @mchrysopoulo @diepflapbreast @6state @olivierbranford @danielzliu @lguzzardim @dr_samuellin @brcaresponder  @karenbrcamtl @brcainfo @pisano_dr @chetnastala @droscarochoa