My Breast Cancer & Breast Implant Illness (BII) Story: Trust G-d, Your Instincts, & Your Body
I thought I knew my breast cancer story. I mean, who doesn’t know their own breast cancer story?! My story, as I knew it for eight years, was that at the age of 37, I shared with a friend that my breasts felt like they contained pebbles, so I had been proactively getting breast ultrasounds every six months. My friend then suggested to me to get a baseline mammogram, which my own gynecologist had not even mentioned could be an option. After receiving a surprising but “lucky” diagnosis of ductile carcinoma in situ (DCIS), I underwent nipple sparing double mastectomy with breast implant reconstruction in October 2011. It was quite a traumatic experience that few people in my private inner circle truly comprehended. My personal choices for my own health were met with much judgement and scrutiny, and my road to recovery was full of painful complications, but I also felt it was a privilege to be alive. I believe in paying it forward, so I became a Sharsheret peer supporter and gave speeches to encourage everyone to be proactive about their own health. It was never easy re-telling my breast cancer story and the lessons I had learned, but I always felt that if my story could help save someone’s life by raising awareness, then the persistent nagging question of “Why me?” ultimately found an answer that provided me with a sense of greater meaning and purpose. This was my complete breast cancer story, or so I thought.
What is Breast Implant Illness (BII) and What Are Its Symptoms
It was in October 2019 after I had just shared my personal breast cancer story on behalf of Sharsheret to the members of my synagogue when I learned about the term Breast Implant Illness (BII), and it shook me to my core. BII is a term used to describe systemic symptoms experienced by women with any type of breast implant as all breast implants, whether filled with silicone gel or saline, are comprised of a silicone exterior. BII affects each individual in different ways. For me, I developed asthma, joint pain (hands, knees, toes, jaw/TMJ), back and neck pain, gastrointestinal problems/lymphocytic colitis, food sensitivities, night sweats, tinnitus, dry eyes, uterine fibroids, benign liver cysts, and a benign lumbar tumor. Other women have also described additional symptoms ranging from autoimmune disorders, brain fog, chronic fatigue, hair loss, headaches, rashes, anxiety, and depression. I had been to numerous medical specialists over the years with extensive tests, and yet nobody could identify any reason for my symptoms. My body was in chronic pain and my health felt hopeless with every new seemingly random and unrelated symptom that developed each year without any medical explanations. One doctor was courageous and said to me, “I believe you. I just don’t have the answer for you now.” It was two years later from that time, eight years total from my original double mastectomy with breast implant reconstruction, when I learned that I was unknowingly living with BII.
With this new information about BII, I learned my body was being harmed daily by my breast implants despite that they were fully intact without rupture. For my body, the chemicals released from implants like acetone or the heavy metals contained within them like arsenic were clearly toxic. Not all women with breast implants experience BII, but for those that do, it has been described as feeling worse than chemotherapy or radiation. Many physicians, including my own original plastic surgeon and breast surgeon, denied the existence of BII, and it is not yet considered an official diagnosis recognized by insurance companies. Breast implant safety has a long history of controversy, but to me the key message was that for many women there is a significant reduction of symptoms over time if implants are removed or explanted via en bloc method or total capsulectomy, where the entire scar tissue surrounding the implant is removed as one piece, leaving behind no scar tissue in the body. Trusting G-d and my instincts, and through listening to my body, I knew this was the answer for me.
Choosing Profunda Artery Perforator (PAP) Autologous Tissue/Flap Reconstruction After Breast Implant Removal
With this one main decision came many others. Having lived through a traumatic double mastectomy/amputation of my breasts the first time, how could I successfully navigate what would essentially be a second double mastectomy/amputation? Would I want to remain flat after explant or was I a candidate for other reconstruction options? I learned that going flat is a preferred option for many women. However, this option was not right for me personally as I knew it was important for me to be able to recognize myself and experience how I defined feeling whole for me. As someone without much body fat, my choices for reconstruction were limited. I ultimately chose profunda artery perforator (pap) autologous tissue/flap reconstruction as I felt this was the right choice for me. This procedure was not offered to me in 2011 when I was first diagnosed with breast cancer as it was fairly new at the time. My health decisions were now again under scrutiny as I was reminded by concerned friends that I had no way of knowing whether my own BII symptoms would improve and yet I was willing to do such an invasive surgery with many risks and no guarantees. When my older son asked me about my reconstruction choice, I explained to him, “If in your entire life you knew yourself as a person with arms and then they were taken away and you were given a chance to re-build them, would you do it to feel whole and feel like yourself?” I know I am blessed and lucky to have the strong support of my family and close friends throughout this journey.
The bottom line for me was that I trusted G-d, my instincts, and my body. Leading up to my explant and pap flap surgery, I could barely breathe without coughing even with the help of two inhalers to treat my asthma flare due to BII. However, within the first day of my surgery, my asthma was gone. As I am still recovering from my recent explant and pap flap surgery performed by my amazing surgical team, I am very grateful. I fully believe that my body is truly a living miracle from G-d and I trust that I will be fully healed in time from all of my BII symptoms.
If you are facing a situation of uncertainty, whatever it may be, let my story encourage you to also trust G-d, your instincts, and your body. With that plan, you can never go wrong.