I am a daughter, sister, wife, mother, and I am also a two time breast cancer survivor. In January of 2002 I was diagnosed the first time. I had two lumpectomies, eighteen weeks of chemotherapy and six weeks of daily radiation. It felt like I had the best care and protocols at that time for my breast cancer diagnosis. But, cancer has a mind of its own and in 2014 I had a recurrence and this time it was in both breasts. I knew I faced a double mastectomy.
The news was devastating as it is for most women and men who hear that body parts will be removed to rid you of cancer. Despite devastating news the day I was told I had to have a mastectomy, there was also hope. My breast surgeon gave me all my options for reconstruction the same day as my consult for my double mastectomy.
I was one of the minority of fortunate patients provided with education about implants as well as autologous reconstruction; using your own tissue to rebuild breast after mastectomy. My breast surgeon proceeded to tell me that DIEP flap breast reconstruction is considered the “gold standard” because it uses your own tissue. DIEP flap is a highly intricate procedure requiring a specialist in plastic surgery called a microsurgeon.
It seemed like such an easy decision for me to make based on my preference to use my own tissue. Many women have successfully and happily chosen implants but I chose to have DIEP flap breast reconstruction. An easy decision turned into hours and days spent trying to find a highly successful and qualified microsurgeon to perform my procedure to restore what cancer had taken from me.
I found that plastic surgeon and in December of 2014, seven months after my double nipple sparring mastectomy my breasts were restored. It was nothing short of a miraculous process to me, my family, and the friends who supported me through the surgery and recovery. The procedure and emotional support I received from the plastic surgeon inspired me to begin supporting other women through their own reconstruction process.
DiepCjourney Blog
I started writing a blog, DiepCjourney.com, about my own journey through the breast reconstruction process and became actively engaged in the breast cancer and breast reconstruction Social Media community. I began to push the word out to women and men who were not given the same information I was about options for breast reconstruction. Many had no idea of the intricacies and details it took to have successful breast reconstruction whether they chose implants or autologous. I raise awareness about the Breast Cancer Patient Education Act reintroduced on the House floor in May of 2014. The bill was passed into law in December of 2015 to help educate more patients about their options for breast reconstruction after mastectomy. But I knew there was work to be done.
Facebook Group
I opened a Facebook group in June of 2015 and it seemed as if the flood gates opened. By word of mouth more and more patients find the closed/private group I administer. It is a warm, welcoming community to support patients going through mastectomy who focus on rebuilding their lives after breast cancer. I collaborate with healthcare professionals serving breast cancer patients giving credibility to the information I share with patients.
What started with a blog became the inspiration for opening the non-profit DiepCfoundation.org. I realize that until there is a cure for breast cancer, there will always be a need to educate and inform others about their options for breast reconstruction after mastectomy. This community includes those affected by breast cancer patients including those who carry a gene mutation putting them at high risk of getting breast cancer. DiepCFoundation provides resources, evidenced based information, and support. These resources are much needed to assist those on their own Journey to rebuild their lives after mastectomy.
I am a a patient advocate champion who promotes the shared decision-making model in health care. As a co-lead on the World Health Innovation Summit (WHIS) shared decision-making team, along with team members we will continue to promote the shared decision-making model to empower patients to make their own best health care decisions.
To inquire about public speaking at conferences and events to educate about options for breast reconstruction and what shared decision-making can do to empower patients and physicians, I can be reached at: tcoutee@diepcfoundation.org
See the Foundation Advocacy work here to find out more about our work.
Continuing the Journey ~
Terri Coutee
Founder & Director of the non-profit: DiepCfoundation.org