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By Robyn Towt
Breast Cancer Survivor in San Antonio
My name is Robyn Towt.
I am a three-time cancer survivor, most recently diagnosed with breast cancer in 2017 at the age of 44. I had stage one IDC that was found during my routine mammogram and ultrasound.
I did not have any treatment, only a bilateral mastectomy and reconstruction with Mentor silicone breast implants.
The implants caused an array of debilitating health issues, something that none of my doctors told me could happen. I had symptoms ranging from chronic migraines, rashes and extreme fatigue to debilitating insomnia, burning pain, heart palpitations, hair loss, difficulty breathing, difficulty swallowing and muscle pain.
I had the implants removed after just four months and all of my symptoms completely resolved. I made the choice to stay FLAT, and gaining my health back also gave me my confidence back, even without having breasts. It was such a feeling of freedom and empowerment to make this decision that was right for me, even though it may be against what society dictates we should do when we are diagnosed with breast cancer.
This experience led me to become an advocate for raising awareness about breast implant safety and proper informed consent, and for doctors to present patients with all surgical options including aesthetic flat closure. My doctors did not present the option for me to stay flat, I was only offered reconstruction and I was never presented with the proper information that would enable me to make an informed and educated decision.
I have shared my testimony twice at the FDA in Washington, D.C. I became co-founder of Global Patient Advocacy Coalition (GPAC) and I am also an administrator in various online support groups for women who are suffering from Breast Implant Illness.
Collaborative efforts with the FDA, industry, and medical societies have led to progress in finding solutions for increasing awareness and patient safety. I have worked extensively with Arizona legislators and medical boards in passing an informed consent law for breast implant surgery and our GPAC team is currently working on similar legislation in several other states.
Our GPAC team has also partnered with the American Society of Plastic Surgeons (ASPS) to develop a consensus patient decision checklist that was created collaboratively with plastic surgeons, patient advocates, and the ASPS Government Relations team.
I am passionate about raising awareness and protecting patients. I believe every patient should be given the opportunity to make an informed and educated choice regarding surgical options after mastectomy, and every patient deserves to have all of the information prior to having surgery.
For me, survivorship has been about learning from my experience and using the knowledge that I have gained to help others. I have turned my mess into my message.
It has been extremely rewarding to know that my trials have helped others to experience better patient outcomes and my advocacy work will help to improve the standard of care.
In the words of Maya Angelou, when we know better, we do better.
Editor’s Note: This is part of a series of guest blog posts from Breast Friends Forever (BFF) in San Antonio, Texas (64% Latino). BFF is a support group that enables young breast cancer survivors to share stories and experiences, developed by the Institute for Health Promotion Research at UT Health San Antonio (the team behind Salud America!) and Susan G. Komen San Antonio. Email BFF or Visit BFF on Facebook. The main image, a screen grab from a video, and additional images feature Robyn Towt.