I was implanted with textured silicone Allergan implants on September 4, 2012 at the age of 24 in my hometown, Ottawa, to correct severe asymmetry. It was covered by the Ontario Health Insurance Plan (OHIP) through a reconstructive surgeon.
While I was self-conscious about having scoliosis and occasionally dreamt of bigger breasts since the age of ten when boys compared me to cosmetically enhanced women, I didn’t actually care all that much about my appearance. But one day, I shimmied in a Zumba class and my singular swinging left breast had my mom thinking that our doctor could possibly do something about it. I would have otherwise never had gotten implants; I didn’t have the funds to pay for them and it wouldn’t have crossed my mind until it was offered as a possibility- a free and safe possibility. I was working with a surgeon who dealt primarily with cancer patients. She assured me that these newer textured gummy implants were extremely safe and would only potentially need replacement after roughly ten years, but that many women kept them in for much longer. The only complications mentioned were regarding general surgery and capsular contracture, both of which were too rare to discuss in detail. I was never even made aware that the body grows cells around the implants in an attempt to protect itself from these foreign objects; these are called capsules. There was also no mention of wide-ranging side effects or of potentially developing cancer.
Fast forward to 2017 and I no longer recognized my body. I had symptoms so broad that my family physician didn’t know what to make of them. Blood tests kept coming back negative. Then when a significant amount of blood was found in my stools, I had to do an emergency colonoscopy. Upon reading the notes from my family physician, the doctor performing the colonoscopy supposed that colon cancer was possible in young adults, but it wasn’t colon cancer nor was there anything wrong at all with my colon. Around the same time, I had rashes forming on my hands, daily nausea, swollen lymph nodes, fatigue, muscle and joint pain, stomach pains, eye soreness, tension headaches, migraines, vertigo, chest pain, heart rhythm changes, panic attacks, smelling smoke- the list is long.
That my implants could be the culprit never crossed my mind, nor was it ever a topic of concern with any of the physicians I saw. They made me feel like everything I was experiencing was in my head, so I pushed on just trying to live my life and going against my usual disposition of avoiding over-the-counter pain medication.
Then early 2019, I received a letter from my surgeon about my specific implants being linked to Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL), a cancer of the immune system. Although the letter tried to be reassuring, I quickly drew connections and was convinced I needed the implants removed. In the middle of the summer, the textured implants were recalled and as per the FDA’s website: “The FDA has identified this as a Class I recall, the most serious type of recall. Use of these devices may cause serious injuries or death.”
Despite the Class 1 recall and my persistent symptoms, not one physician I spoke with felt any sense of urgency to remove them. By this point, I had taken so many sick days that my last two weeks before leaving to return to school ended up being unpaid. I felt alone. Many nights, my mind spiralled anxiously.
Around November, I found a support group on Facebook and I finally felt understood and validated. There was a name for the multitude of symptoms I was experiencing: Breast Implant Illness (BII), and it was affecting not only women with implants like mine but also smooth silicone and saline alike. At the time, the group had 80,000 members. It now has over 122,000.
New research is starting to add weight to our voices:
Patients presenting with symptomatic implant BII had significant immediate and sustained improvement in 11 common symptoms after removal of the implant and capsule. (Understanding Breast Implant Illness, Before and After Explantation - Annals of Plastic Surgery, July 2020)
Dr. Feng says her study debunks the theory that breast implant illness is something women are imagining. "It is not in their heads," says Dr. Feng. "This is my life's work mainly because it's such a simple solution. You take out the implant and all the surrounding scar tissue that houses the inflammatory reaction and the implant derived material, and the patient gets better." (Dr. Lu-Jean Feng, October 2020)
While it appears that my explant procedure should be covered by OHIP because my implants were fully covered, this is debated with many of the plastic surgeons I’ve spoken to, some unwilling to go through OHIP at all. It seems unfair to me that many women (regardless of their reasons for getting implants in the first place, whether from pressure of societal beauty norms or having survived breast cancer) who were assured that these devices were safe, now need to pay out-of-pocket to have them removed to regain their health.
I’ve made several dietary adjustments and take many supplements on a daily basis to feel some semblance of normalcy. I get flu-like symptoms regularly which has been scary during these times. I’ve had to toss all my regular skincare, haircare and makeup products and spend a lot of time and money researching and purchasing natural alternatives. Since making dietary changes and using natural products, I no longer experience nausea on a daily basis, but many of my other symptoms have lingered. All of these changes are a bandaid though and I wonder how much longer I have to live like this, not feeling like my age at all, mind still spiralling at night with the thought of having something toxic trapped in my body.
My surgeon is no longer performing breast surgeries and has referred me to Dr. Simon Frank in Ottawa. While Dr. Frank is rather understanding, he does not fully believe in BII nor is he able to perform a full capsulectomy, which is the removal of the implants and all tissue that the body has formed around the implants. Many women who have left their capsules in or part of them have had to undergo repeat procedures to remove all remaining capsule tissue to finally be rid of their symptoms. There is also fear that leaving that tissue behind can still lead to BIA-ALCL.
I spoke with a plastic surgeon here in Sherbrooke and he admitted to being inexperienced in explant procedures and could not guarantee removal of the entire capsule, yet very comfortably asked for $10,000. From there, I consulted the list of recommended explant surgeons from the Facebook group. I had a video consultation with Dr. Nicolaidis in Montreal who claims to believe in BII (though continues to perform breast augmentation nonetheless). He is not willing to go through OHIP and his fee is between $8,000 and $10,000. Dr. Gilardino’s office (also in Montreal) says it could take 18-24 months if I go through OHIP. Dr. Leonard Harris’ office in Burlington, ON, says it could be a 5-year wait to go through OHIP as he has limited time at the hospital.
I’m currently back in school and not working, so it’s impossible for me to get a loan to speed things up. School alone tires me out tremendously, I can’t even fathom working part-time to save up for surgery. I also think it’s ridiculous that we should have to pay out-of-pocket to get explanted faster. Why is Canada not taking this Class 1 recall seriously? Most of us want our implants taken out, not replaced. Many of us have travelled south of the border to get the procedure done as not enough surgeons in Canada are experienced enough to perform the explant properly and the wait times are simply too high if going through provincial insurance as it is still deemed a cosmetic procedure (despite the reasons for getting implants put in are entirely different than the reasons for taking them out).
In 2019, nearly 34,000 women had their implants removed, according to the ASPS. A number that has been going up by the thousands the past few years. And a huge chunk of those procedures—explants often cost between $7,000 and $10,000—won’t be covered by insurance, creating a new health and financial crisis for women. (First, Their Breast Implants Made Them Sick. Then They Were Hit with the Bill. - Cosmopolitan, 2020)
I have now had my implants for 8 years, the average time it takes to develop BIA-ALCL. Physicians still do not see any reason to worry until one of my breasts (or both) actually starts to swell up or present significant pain. Why should I have to wait for things to get uglier before my health is taken seriously? How is an explant procedure deemed cosmetic when we’re told that choosing to do it will make us imperfect again and when we feel so desperately unhealthy? How is it that if a surgeon is able to put them in, that they’re not also trained to remove them properly (with capsule intact)?
My parents have contributed $5,000. A friend suggested I set up a fundraising campaign to help come up with the rest. I feel like this is the worst time to ask anyone for anything.
But I also have really nothing else to lose anymore.
If there are any funds raised in excess of the procedure cost, they will be donated to another woman also in need of an explant.