You are newly diagnosed with breast cancer, going through treatment, or just found out you carry a gene mutation and are at high risk of developing breast cancer. It seems important to begin to explore all your options for breast reconstruction. Your mission, finding trusted breast reconstruction resources.
The thought of any surgery is scary to you. You have the information your health care team gave you. Now you want to talk with someone who really gets it but more importantly someone you can trust. Family and friends are there to support you but can sometimes feel smothering. They try their best to help and console you. Sometimes you need time away, to think, to formulate questions, to find firsthand experience about the choices you know you are facing.
Can You Find Trusted Breast Reconstruction Resources in Facebook Groups?
We live in the age of social media, so you turn to the internet. I went through the same process. What I came to realize after my second breast cancer diagnosis and successful DIEP flap breast reconstruction was, I had a call to action. I wanted other women and men to have access to the trusted information I relied on for my own personal Journey from diagnosis to double mastectomy and ultimately choosing to use my own tissue to reconstruct my breasts.
I set up the Facebook group, DiepCJourney, Breast Reconstruction after Mastectomy. What I realize each day I run this group since creating it is the level of trust I value and work to maintain. It is the same level of trust I wanted when doing my own search for support. Honesty, integrity, and respect are not something one should expect to happen naturally in any Facebook support group.
The Bonds of Trust through Lived Experiences
When I talk to other women and men who have had mastectomy, there often seems to be an immediate bond. You only have to say words like, “I was so scared going through all of this and didn’t realize others were feeling the same way I am.” Or maybe you just need to tell someone who is not a family or friend, someone who gets why you’ve been crying and doesn’t try to fix it, they just listen and say, “I did the same thing when I was in your shoes.”
Vetting Resources Carefully
I meet a diversity of, physicians, health care providers, and suppliers and developers of products and services for breast reconstruction through my patient advocacy work. Providing these trusted resources for the support group comes with responsibility. It takes careful vetting, sometimes diving deep to ensure integrity, and trusting my own sources to provide reliable and compassionate support for Journey members. This group is so generous to express a sense of gratitude to each other for sharing this information.
Each patient brings a unique story to our group. Our personal experiences can vary by the surgeon we choose, the treatment options we have, and the support we need based on our own needs after surgery. I hear so frequently, the words, I couldn’t have gone through this surgery without the support of the wonderful members in this group. We trust each other to provide reliable resources for each other. We honor those going through a difficult time, but we don’t victimize them by making them feel powerless.
Providing and Encouraging Trust in Resources
I encourage consistent and positive compassion. These members deliver. They want the best outcomes for their Journey member friends and provide the best possible resources that were successful for them. When there are setbacks, they rally around a member to offer suggestions grounded in medically based information or evidence-based research and treatment. Once in a while, we catch each other off guard in advice that is questionable and politely circle a member back to trusted resources.
I had successful breast reconstruction because I found trusted resources. Isn’t that what we all ultimately want when we search for support? How did you find your trusted breast reconstruction resources? I would love to hear how it helped you through your own personal Journey.