Three short years ago in the summer of 2015, I opened a Facebook page dedicated to serve the breast reconstruction community. The Facebook page, https://www.facebook.com/groups/diepcjourney/ grew organically by word of mouth. We started out small, as so many new social media sites do. It is growing daily and now 1900 Patients Share Stories About Breast Reconstruction.
What Do We Share?
Think about this. You have just been diagnosed with breast cancer. Now you face the tsunami of information about to flood your brain; lab reports and waiting on results, treatment options, surgery, lumpectomy, mastectomy. Some days you feel overwhelmed, depressed, anxious, or even jubilant. Who will understand all these feelings? Who do I talk to who has been on this Journey?
Think about this. You are told your best treatment option is to have a mastectomy. Perhaps, for peace of mind, you decide to have a prophylactic mastectomy because you are at high risk of getting breast cancer due to a gene mutation. Either way, you would really like to explore what options are available for reconstructing your breasts. You want someone to truly understand the decision you make to have breast reconstruction, no matter what kind you choose. Who do I talk to who has been on this Journey?
Think about this. You have decided you want to move forward with breast reconstruction. Now you’re faced with planning, finding a board-certified plastic surgeon, perhaps even traveling for your reconstruction. You want to know what you will look like, what the results will be, what the complications of the surgery are, when you can return to work, if you can do this with small children or pets at home, or maybe wonder if you’re too old, too thin, or too heavy for reconstruction. What if I lose my nipples? Is there a good tattoo artist who can recreate what was there before? Who do I talk to who has been on this Journey?
Think about this. You have completed your breast reconstruction. Now you have questions about why you’re feeling bloated, swollen, fatigued, or you have a complication from the surgery and need some counsel on what to do next to correct it. You have completed reconstruction and want to share a joyous photo of yourself in your hospital gown, drains and all, with a beautiful smile to show you made it to the flap side after DIEPflap or to tell us your implants are in place. You want to know about an affordable compression garment you can wear a few weeks after surgery. Who do I talk to who has been on this Journey?
Think about this. You know this group has 30 medical professionals including plastic surgeons, oncoplastic breast surgeons, radiologist, physical therapist and tattoo artists, that are warmly welcomed. They answer our most difficult and perplexing questions and encourage us when we need it most. They have even made educational videos to share with us about topics on breast cancer, breast reconstruction, and oncoplastic breast surgery. You feel lucky they are there to help you along this Journey.
As the administrator of this site we fondly call “The Journey”, I am humbled daily by these stories. I am grateful for these medical professionals, and I am inspired daily to continue walking this Journey hand in hand, right beside these wonderful, compassionate, positive, realistic, and strong #JourneyStrong members. Happy 3rd Birthday to the Journey!
This is who we are and why 1900 Patients Share Stories About Breast Reconstruction! Come join us on the Journey!
Wow! How amazing Terri to see how far this group has come!
Hello Marie and thank you so much for your comment. I feel the same way about the Journey. It is through the strength and sense of community from the members that makes this online support group so powerful. I am particularly honored we have so many fine physicians who are not only welcome on our site, but actively engaged. I’m glad you’re traveling this Journey with us! ~Terri