I’d wanted boobs for as long as I can remember and by fifteen had a full set. As a little girl, I admired the curvy hour-glass figure of my older sister, Maxine: the way a bikini bottom sat on her hips and how the triangle-shaped top left the sides of her breasts bare and visible. The sneak peeks of my mom’s full bosom when she removed her brassiere turned into a stare. I hadn’t remembered how obsessed I was with boobs until mine ruined my life.
When I got pregnant at fourteen, I didn’t know it until I was three months along. I didn’t look pregnant until around six months when my belly got round and my boobs started swelling. I went from having little buds to busting out of a double-D bra in just over a few months. Although being pregnant at such a young age was a shock to my underdeveloped body, I was left with my hour-glass figure and my boobs were full—that is, until they weren’t. By the time my daughter was two-years old, my boobs shrank and shriveled up. Being stretched so far so fast, they sagged; reminding me of a picture I’d seen of an old woman in a National Geographic magazine. But I wasn’t old, I was a teenager.
I had loved how having full breasts made me feel like a woman, like a grownup. And I felt sexy too. As I’ve gotten older, the boob obsession has settled into more like an appreciation and less of a fixation. But realizing that my fascination with boobs started at such an early age has helped me understand my reasoning for getting a boob job at thirty-five years old. It was the spring of 2000—a few months before our wedding—when my soon-to-be husband agreed with my decision to have breast augmentation. I wanted to look like the Barbie doll I never had in my very own, first ever, wedding dress on our big day.
My breast augmentation surgery was exactly nineteen years ago this month (May). A few years after getting the implants, I started not feeling well and had my first (of many) trips to the ER. All these years, I had no idea that the implants inside my chest could be slowly killing me; I had no reason to make the connection. Until now.
It was one evening this past March, while sitting in bed having tea and reading a book when my husband, Bill, who was also reading (on his phone), sent me a link and said, “I just sent you a link. I think this might be what’s wrong with you.”
What’s wrong with me is that I am very sick. I was recently diagnosed with my third autoimmune disease, something called Mixed Connective Tissue Disease (MCTD). The Washington Post news article was about how a rare form of lymphoma, called Breast Implant Associated-Anaplastic Large Cell Lymphoma, or BIA-ALCL, and rare autoimmune diseases (like MCTD), are linked to breast implants. In addition to being diagnosed with multiple autoimmune diseases, I’d been on alert for lymphoma for over ten years, including one surgery to remove and biopsy an angry lymph node in my neck.
Reading the article left me feeling stunned—it was describing my life. My curiosity was piqued and sent me on the hunt for more stories about BIA-ALCL and Breast Implant Illness (BII)—where I found a story by Amy Clancy, an investigative reporter with Seattle’s KIRO Channel 7 News, about two women who had undergone explant surgery (removal of the implants) and how their health was bouncing back. After watching Clancy’s piece, my search expanded. I have since learned about support groups, the website Breast Implant Illness and another cite dedicated to BIA-ALCL as well as experts such as Dr. Pierre Blais and Dr. Arthur Brawer, among many more, who’ve been studying and publishing their research about how breast implants make people sick, and even die. For example, read this publication, Mechanisms of Breast Implant Toxicity: Will the Real Ringmaster Please Stand Up by Dr. Brawer.
Dr. Mark Clemens of MD Anderson Cancer Center, one of the pioneers in BIA-ALCL along with dozens of women, spoke at the FDA meeting in March, 2019, receiving attention by the media—which is how I found out (through my husband) about the link between breast implants and illnesses. It is researchers and doctors like Mr. Clemens along with the brave women who are sharing their stories (many of whom are in the throes of fighting for their life) that people like me are learning about BII and BIA-ALCL and figuring out how to help ourselves. Thank God for these courageous and hard-working souls who are bringing awareness to BII and BIA-ALCL.
“Our lives begin to end the day we become silent about things that matter.”
~Martin Luther King Jr.
When I first started feeling really sick, around 2005, my primary care physician and rheumatologist thought I had lupus because of the positive ANA test along with other markers. They kept me on a “wait and watch” protocol as I worked to heal by modifying my lifestyle and diet. The years of intense and constant work to stay healthy helped me avoid a formal lupus diagnosis, but I have since been diagnosed with three autoimmune diseases: Sjogren’s Syndrome, Raynaud’s Disease and Mixed Connective Tissue Disease. I have lesions on my brain and damage to my heart. In addition to these injuries and illnesses, I have dozens of other health problems: ranging from cysts in my hands (involving a very difficult and painful surgery); lesions on my chest, scalp and arms; debilitating pain in my heels; deep pain and itching in my breasts; a constant feeling of pressure, and intense pain, in my chest wall, ribs and back; two surgeries (and one more to come) for gum recession; numbness along the left side of my body; constant ringing in my ears; and something called “brisk reflexes” that I’d never heard of until recently (and much more). I am the poster child for Breast Implant Illness.
In 2016, my rheumatologist urged me to start on a drug called Plaquenil. I told her I’d think on it. I don’t like taking drugs. The day after seeing my rheumatologist, the pharmacy called to say my prescription was ready. I was surprised that my doctor ordered the drug, but figured it was one more way of her expressing concern and insisting that I take the medicine. After picking up the Plaquenil at the drug store, I held it in my hands, close to my heart, and sat in meditation asking and praying to God if it was safe. After about two weeks of serious contemplation and discussion with my husband and daughter, I started the drug.
Although the medicine seemed to help a bit, and considered a pretty clean drug with minimal side effects, the one side effect, although rare, that I couldn’t find peace with was the risk of vision loss. I also have the beginning stages of macular degeneration and have had one scare with a torn retina. After a year, I stopped taking the medicine. The thought of not being able to look into the eyes of my two grandboys, daughter, and husband weighed heavy on my heart and taking the medicine just didn’t feel right. I decided, instead, to tackle the autoimmune diseases by following an even stricter regimen to reduce inflammation and stress. I could go on and on about “what’s wrong with me” and all I’ve been doing to help myself but the list is just way too long to get into here. But, as alarming as my story sounds, more alarming is that thousands of women who’ve had breast augmentation are worse off than me. Hundreds (maybe thousands now) have been diagnosed with cancer and some have died from it.
The FDA has released statements stating that BIA-ALCL is deadly and acknowledges that BII is real. But despite the FDA announcements, extensive research and case studies, many doctors still claim that BII does not exist and that since BIA-ALCL is rare, do not take patient’s symptoms seriously. Canadian chemist Pierre Blais suggests that the reason BIA-ALCL is considered rare is because it is underdiagnosed. It is underdiagnosed because it is undertested. It is undertested because doctors are either ignorant, corrupt, or turn a blind eye—and in some cases, all three. The ignorance is somewhat forgivable; there’s a lot to learn and it’s hard for doctors to stay informed about new and rare diseases. The corruption is criminal; these people deserve whatever punishment or consequences are coming at them now that BIA-ALCL and BII are gaining some traction with the FDA and media outlets are using their platforms to bring awareness. Turning a blind eye is cowardly. These cowards go on the top of my “Shame on You” list because they know, or at least sense, that breast implants are (at least could be) linked to disease, injury and illness; yet they choose to keep quiet instead of using their powerful position in medicine to help those suffering—and, most important of all, save a life.
“The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing.” ~Albert Einstein
Extensive research by silicone toxicity expert and rheumatologist Dr. Arthur Brawer shows a connection between breast implants and the body’s autoimmune-like reaction. He argues that the body does not necessarily have an autoimmune disease, but instead is reacting to a foreign object and is mimicking autoimmune disease. According to Dr. Brawer’s research, “silicic acid (a breakdown product of silicone) can cross the blood-brain barrier” which is triggered by Autoinflammatory Syndrome Induced by Adjuvants, or ASIA. That women have drastic improvement to their health after explanting—as discussed in the story by Amy Clancy of KIRO News—brings additional credibility to the work by Drs. Brawer and Blais as wells as many other researchers and experts. Thousands of women are having adverse effects after getting breast implants and there’s simply no denying it. Thousands are healing and many are completely symptom-free after explanting.
Medical devices certainly improve lives in profound ways: joint replacement keeps people walking; pacemakers keep hearts pumping; and prosthetics help people look, act and feel “normal” again. But, medical devices are supposed to be put through rigorous testing before being used in the human body. Near as I can tell, most devices are properly tested because millions of people around the world are able to live a better life because of the particular medical device that’s transformed their life. But, on the other end of the spectrum are breast implants—medical devices that are purported, and sold, as inert and safe and can even “last a life time” (as many plastic surgeons claim)—which have not only not been tested properly, numerous studies have proven them to be harmful, even deadly. Yet, the FDA maintains that breast implants are safe and, shockingly, will not ban the particular implants that put women at the highest risk for BIA-ALCL; the ones with a textured surface. The kind I have.
Nearly 40 other countries have banned textured breast implants because they kill. To date, twenty women (worldwide) have died of BIA-ALCL and experts believe the number is likely in the thousands because the users (victims) were not properly tested. Researchers suspect that women have died of lymphoma linked to their implants, but were misdiagnosed; therefore, not given the proper life-saving drug. The FDA claims that because only 10% of all breast implants in the US are of the textured variety, there’s no need to ban them. If there’s only 10%, then, I argue, what’s the harm? This doesn’t make good sense to me.
To “rule out” BIA-ALCL, as recommended by the FDA for women who are symptomatic requires a very specific testing protocol. But, alarmingly, the FDA’s recent announcement states that many doctors, including the all-important pathologist, do not know how to test correctly.
“As we undertake this effort, we recognize that there is a need to help to ensure that information reaches health care professionals and women. We are aware that there are some health care professionals, such as gynecologists, dermatologists, internists and pathologists, who may not be fully aware of these breast implant risks, like BIA-ALCL and systemic symptoms. We are committed to doing what we can to reach them with this important information, including continuing the outreach we started with our Letter to Health Care Providers to educate the medical community about BIA-ALCL and other risks of breast implants. We also plan to work with the pathology community to educate pathologists about testing for this lymphoma specific to breast implants.”
As I go into surgery on May 21st to have my implants removed, my biggest concern, aside from the anesthesia (because it almost always makes me sick), is that the pathologist will not follow the specific protocol to “rule out” BIA-ALCL. I’ve been told by my plastic surgeon and his triage nurse that they’ve spoken with the pathologist directly. This pathologist is the lymphoma expert and has assured them that everything will be tested correctly. But the stories I read from women in the (closed/private) Facebook group is troubling. Many women go in for explant with the understanding that their tissue will be tested for BIA-ALCL only to hear later that the pathologist didn’t “see” anything abnormal to warrant such testing. As I understand it, though, you cannot SEE the disease with the naked eye or even under a microscope. This fundamental problem—that many pathologists do not check for BIA-ALCL because they lack understanding and skill—is beyond not okay. It’s dangerous.
“Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.” ~Martin Luther King Jr.
All I know is that I’ve done all I can to communicate my concerns and demand the right protocol for the actual explant as well as the needed testing. Since reading the article that my husband sent me almost two months ago, I have been in a frenzy—a panic at times—trying to help myself and find a skilled plastic surgeon to remove the implants. Because of my long history with autoimmune diseases, damage to my body, and being on alert for lymphoma, my anxiety over the recent weeks has been like nothing I’ve ever experienced.
This is all new to me and I’m still learning, but one thing I know is that removing the implant is much more involved than the initial surgery and requires a meticulous hand and precision with the knife. The plastic surgeon I’ve chosen for explant surgery has additional training as a microvascular surgeon who performs complicated reconstructive surgeries for women who’ve had mastectomies due to breast cancer. And, on that note—that breast cancer survivors who must now deal with BIA-ALCL is a whole other level of devastation and alarm. Many women who’ve battled and beaten breast cancer undergo reconstructive surgery which often involves using an implant. Thankfully, one woman’s story about receiving implants after beating breast cancer, and has since had them removed, is bringing awareness to other breast cancer survivors who could be at risk.
There’s a lot to learn about who is more vulnerable to the adverse effects, but to even know if you are at risk, requires transparency and full disclosure by the manufacturers and the FDA to hold the manufacturers accountable for testing and tracking and reporting the multiple (known) issues that breast implants can have on a person. It really isn’t that difficult to make a database; even I figured it out, with no formal training, in the late nineties when I worked in engineering.
A proper database tracking system from the manufacturers could have informed people (or their plastic surgeon) for example, as soon as data showed a connection between implants and lymphoma. For example, if I had known about the 2011 FDA announcement about the link between breast implants and lymphoma, I would likely not be as sick as I am today—because I would have gotten them out then. As I read more, I actually see literature all the way back in the 90s about MCTD, Sjogren’s and autoimmune disease in general. I had no idea, though, and it never occurred to me to monitor FDA announcements. Who does that?!
Now that I know to look, the FDA website is a place to stay somewhat informed. The FDA sent a letter to health care providers in February, 2019 and they have a page dedicated to Breast Implants. As of September 2018, the newly formed National Breast Implant Registry (NBIR), a collaboration between The Plastic Surgery Foundation, FDA and breast implant device manufacturers, aims to “strengthen the post-marketing surveillance infrastructure for current and future breast implant devices.” So far, no one has contacted me to collect information about my “current” implants. And based on the very difficult process to obtain my operative report and (partial) medical records, I’m pretty sure no one from my (original) plastic surgeon’s office will be contacting me about logging my devices into any database; let alone inform me about any risks.
For now, I just want to get safely through the explant surgery and on my way to healing. I truly believe that I will finally find true and lasting healing once I get these foreign objects out of my body. I feel certain that these implants are the root cause of my long list of health issues. I just hope and pray that I haven’t waited too long. I will write a follow-up essay in the coming months to report my progress. From what I’ve read, some women feel better right away; while others require months and years to heal.
Since learning about BII and BIA-ALCL, I’ve been ruminating over all the “what ifs” and spending extra time on my therapist’s couch working to control my anxiety. While talking with my therapist this past week, I realized something important about my fascination with breasts. The mother’s bosom is a place of nurturing, sustenance and safety. I have no memory of sitting on my mother’s lap being cuddled, coddled or cocooned. I figure, on some psychological level, getting a bigger bosom was not just about the aesthetics, but perhaps filling a void. A yearning.
My dear friend, Carol, wrote this about finding power in truth: “I had to trust that publishing my memoir would bring more good to others than harm to me.”
That’s how I feel about sharing my story here. Although I feel more vulnerable and exposed than at any other point in my life—as I anticipate shaming, judgment and criticism—not sharing my experience would fill me with regret and leave me with a never-ending question: What if sharing my story could have saved a woman’s life?
“There is only one way to avoid criticism: do nothing, say nothing, and be nothing.” ~Aristotle