"They're completely safe"
In 2015 I was diagnosed with Breast Cancer in my right breast. I had a mastectomy with immediate reconstruction (a Mentor gel implant). I'm not gonna lie. When I woke up from surgery, I thought I'd won the lottery. When I looked down, I saw two perky breasts (the surgeon had done a reduction & lift on the other side).
I decided against chemo & radiation, and focused on healing my cancer with alternative treatments (after 7+ years, I'm still cancer free).
Life was great.
Until it wasn't.
I started noticing that I was dropping things frequently. Like I would be holding a glass of water, and it would slip out of my hands.
And I started feeling like I had an elephant sitting on my chest.
And I couldn't wear my contact lenses anymore because it felt like I had a scratches on my eyeballs, even though my Opthamologist said there was nothing wrong with my eyes or my lenses.
I had a clutching, grabbing sensation in my chest.
My joints began aching and I developed rhumatoid arthritis in my hands. These were just the most pronounced symptoms but there were many others.
Because of the "elephant on my chest" feeling, I went to the Oncolological Surgeon who had done the reconstruction, and I asked her "Is it possible that there's something in the implant that is giving me all these symptoms?"
Her answer: "They're completely safe. Your implant has nothing to do with your symptoms. It's just a coincidence"
I went home determined to find the cause of these medical issues, because I knew I wasn't imagining them.
That's when I stumbled on some websites and social media groups dedicated to "Breast Implant Illness". I'd never heard the term before. But when I started looking deeper, I discovered that thousands of women in Canada were experiencing the same symptoms (and more) as I was. View a non-exhaustive list of symptoms of BII (Breast Implant Illness)
The common denominator? Our breast implants. Although it was a surprise to learn that BII was quite common, it was also a relief to know that I was not alone.
I joined an Advocacy Group and started doing more research. One of the things I found was this 40 page Product Insert Data Sheet. This Data Sheet was much like you would receive when you go and pick up a prescription (which, by the way, requires a "Pharmacist Consultation" if it's your first time using that drug). Imagine my shock when I discovered that my symptoms were listed in the "known adverse reactions" of this device that was recommended to me, to supposedly make my life better after a breast removal?
I had two burning questions: 1) Why wasn't I given a copy of this Product Data Sheet? and 2) Why wasn't I asked to review the possible adverse reactions & then required to sign a form saying that I understood the risks?
Our Advocacy Group worked hard to make Health Canada aware of the dangers of breast implants, and we also petitioned the Federal Government to create a study on the harmful effects of silicone devices.
In the meantime, I visited my Surgeon again, this time armed with a copy of the Product Data Sheet, asking her why I wasn't made a aware of these adverse reactions before the surgery. Her response: "Oh, that's just legalese. They have to put that in there to avoid lawsuits" And again, she reiterated: "I wouldn't have recommended a silicone implant to you if it wasn't perfectly safe. Don't believe everything you see on google. There are lots of people out there who may be having these symptoms but there's no scientific data to prove it's linked to silicone implants"
Feeling unheard, I went home and did more research. This time, "on google", I found a handful of PubMed studies showing the direct correlation between Connective Tissue Disease and silicone in the body.
Armed with copies of these studies, I went back to my Surgeon again, thinking, "Finally she'll listen because I'm showing her actual clinical studies". This time her response was one of anger. "Fine. If you want, I'll remove it", and immediately left the room to get the surgical forms to sign. While she was gone, I knew there was no way I could let this person operate on me again, when she didn't even believe what I was telling her.
In retrospect, I can understand it was an affront to her skills and her expertise. After all, she had spent years perfecting her procedure for performing a mastectomy and then inserting an implant under the pectoral muscle, all in the same surgery. She was well respected and in high demand. Believing she was doing something good for oncology patients, why would she want to hear that she was actually doing harm?
I set to work to find a Surgeon who was an expert in doing explants & had a proven track record. And in 2018, I had my breast implant removed.
Immediately after waking up from surgery, I felt as if the elephant was gone from my chest. I could breathe again. After a few weeks that scratchy burning feeling in my eyes was gone and I was able to wear my contact lenses. The numbness in my hands went away, along with many of my other symptoms.
You can read more of my story here.
Image: What you see in my left hand is the "capsule" that formed around my implant. Your body forms a capsule any time a foreign object is implanted, as its way of "fighting" against it. In my case, the capsule had contracted. This is called "capsular contracture" and is what was causing the clutching, grabbing sensation in the affected breast area.
Video: Examination of the implant & capsule after receiving them from the hospital.