Cancer is hard. Yes. But can you believe that breast implant illness felt worse? After experiencing ‘mystery’ symptoms for the last couple of years I can confidently declare that it was breast implant illness all along. All it took was approximately 12 doctors, countless conversations with women, growing media attention, a strong gut feeling and the willingness to go against medical opinion… Oh, and explant surgery.
Breast implant illness. Otherwise known as BII.
Just before Christmas, about a month ago, I finally had the implants in my reconstructed breasts removed. Clearly I felt like I needed to end the year the same way I started it – with a bang.
Breast implant illness is something that isn’t very well understood by the medical community. And that’s me putting it politely. Another way of saying it is… that it’s something that has largely been ignored and purposely hidden in the medical community in order to protect the bottom line. It all comes down to money… a disregard for women’s health… the priority of beauty over health… a societal expectation that women look a certain way or want to look a certain way… I could go on. But I won’t even go there for now, I’ll stick with my own experience.
Most women who get implants will probably be fine. But some women won’t be. I was one of those women. My body clearly had a poor response to having foreign objects inside it. It was triggering an autoimmune response that was making me sick, and my body was beginning to physically reject the implants.
I believe my problems were triggered in August of 2020.
Note: COVID was in full swing – but I’ll leave all of those details out for now.
After one of my reconstructive surgeries I ended up in the hospital with an infection. I was warned by the infectious disease specialist that my implant may need to be removed. It was upsetting, but there was nothing I could do. But after a week in hospital and over a month of being attached to IV antibiotics at home, everything cleared up. I was good to go. Everyone agreed. No need to remove my implant after all. I was happy.
But I wasn’t feeling great. I was ok, but not great. Didn’t matter… on with life I went. I was cancer free, my surgeries were finally over and there was nothing in my way. I got back to life and I did the best I could to move forward and keep building my life and career again.
Normal life health things came up – like colds, recurrent strep throat… and other things I’m probably forgetting. I guess my immune system wasn’t what it once was. I knew I had some recovering to do, so I continued to do my best to build back my health.
I was feeling fine. A new version of fine. But I will admit I was dealing with anxiety, and low level depression because I was struggling to truly feel free from cancer. I had heard about how hard it could be for cancer survivors to move on with life, get back to normal and feel like themselves again. But I never thought it would happen to me. But it was. I didn’t feel great and my mind was something that needed a little work. Of course for the most part, no one would have known.
I went on vacations, I went out with friends, had tons of family fun, crushed life with the kids, and work was going really well. I was doing everything right. But I couldn’t shake this ‘malaise’, a general feeling of unwellness, achy flu-like symptoms. I couldn’t really explain it, to my doctors or to anyone else. To myself even.
Suck it up Lindsy, you don’t have cancer, you’re good… get over it. Be grateful. It’s just the way it is now. It could be so much worse…
But I couldn’t shake it. I couldn’t shake the feeling that something was wrong. I was feeling worse and worse – still doing a good job at keeping up with life… but I began to medicate with stronger medications. First low doses, then the doses started to climb. I felt ashamed to be on such strong painkillers, always worried about becoming addicted, and the stigma attached to them. But I couldn’t function at the level I needed to without it. My doctors told me over and over that they’d rather I continue with normal life activity on medication than not be able to keep up without it. I could sense them giving up. Medicate and move on.
This is when I began to seek out the opinions of other doctors. I started in January of 2021. I couldn’t understand why I was always getting sick and why I always felt sick.
At this point breast implant illness was an idea I had in my head, but I have NO memory of who or how it was introduced to me. No clue. TV maybe? Social media? A celebrity went public with their brave story of going from double D’s to average C’s??? Who knows. But, I began asking all of my doctors what they thought about it. MAYBE this was it. There were no other explanations, so it was worth looking into, don’t you think?
No. Turns out they don’t think…
My primary oncologist told me I was good. Everything looks good. My tests are all good. Maybe I just need more time to recover from treatment…Breast implant illness isn’t likely, it’s not proven and there’s no real studies or legitimate evidence that exists.
Ok.
I saw an infectious disease specialist in the US (virtually), and they couldn’t see anything that stuck out. Although they were genuinely sympathetic to my health history, they couldn’t see any obvious answers. And they didn’t have experience with BII so they couldn’t speak to it. They wouldn’t speak to it.
Next.
I went to a rheumatologist. He suspected Sjrogen’s syndrome, or arthritis… I was actually beginning to feel relieved – I had an answer! Sure no one wants a new autoimmune condition… But at least I could close the book. Until it was later ruled out after all my testing came back normal. Fibromyalgia? Nope. Arthritis again? But.. we already… ruled it out… I thought…
Ok then how about breast implant illness? No chance. It’s not a real proven medical condition. Bluntly, no. I remember him telling me something about how he’s heard about women complaining about it on social media…. but the medical community agrees that BII isn’t something that’s medically proven.
Awkward.
I checked in with my GI specialist, who told me they didn’t believe what I was experiencing could be connected to my Ulcerative Colitis. I’ve had UC almost my entire life, and I was currently symptom free and considered to be in remission. So there was no reason to suspect anything to do with my UC. I even asked them about BII – which was way out of their wheelhouse – and not surprisingly they were hesitant to offer an opinion.
I understood.
My family doctor was monitoring my medications, and keeping me up with the painkillers I needed to get through my day. BII? She couldn’t give me a concrete opinion. But she listened to my reasoning – which was getting stronger – and told me IF there was anyone who had the predisposition for it – it would be someone like me.
Someone like me. I’ll take it! That was the first time a doctor somewhat acknowledged it.
I saw my plastic surgeon and asked if my surgeries could have led to sickness related complications… no dice.. BII? No. He had no direct experience with it, none of his patients had ever had problems… and there was only one study on BII out there and it wasn’t a very good study… not very convincing. So he highly doubted that was the problem. After all, look at all the people who have implants and they’re totally fine.
Boob jobs here, boob jobs there, boob jobs everywhere.
I was getting frustrated.
Then one day at a physiotherapy appointment, my physiotherapist was getting concerned. She saw me regularly and was watching my condition get worse instead of better. And then something happened. One day she found a small lump on my chest.
“Do you feel that?” She said. Cue the panic.
It was around the surgery area, so it was probably related to how I healed… but it was there, and it was impossible to ignore. Was it likely anything other than THAT? Probably? Were all my symptoms beginning to look a different way to us? Yes. I had a lump and I had a ton of unexplained symptoms. When you put it all together it became painfully clear that there was a chance this was a cancer recurrence.
Back to my surgeon’s office.
He decided to order an MRI in order to rule out a recurrence. The scan appointment was scheduled for two weeks from that day, the longest two weeks of my life.
I wrote about this time previously so I won’t get back into it in too much detail – but I will say that during those two weeks I began to see everything differently. If it was in fact a cancer recurrence then that would mean it was stage 4, and that would mean it was terminal. I felt like I was slowly dying, so maybe I was… all of a sudden it made sense.
Then the scan results came back clear. I was elated. Obviously. No cancer! But then the sinking feeling…what the fuck was happening then?
I was so tired.
I went to another rheumatologist for a second opinion. He didn’t have much to say to me that any other doctor had said. I asked about BII, and he told me he knew one patient who had similar symptoms and had her implants removed and felt better. The only way to know was to remove them, no testing could prove what this was.
It was something.
I saw my therapist and began to question if I was making this all up. Was I someone who had no identity without sickness? Was it all in my head? No. But it didn’t change the fact that I was beginning to feel crazy. I felt like no one was listening to me, I felt like no one cared.
Every appointment I had with every specialist I would ask about BII and no one had anything useful for me. So I began to talk to other women, and I began to look up all the information online – including support groups.
I found hundreds of thousands of women with stories just like mine. I began talking to local people I knew through other people, and those conversations helped me immensely. This was real. Their experiences were real. This might be my reality too.
I found the name and information for a plastic surgeon who specialized in explants for women with BII and I went to see him. He answered all my questions and assured me BII is very real.
REAL.
He talked about why he thought it was so hard for other doctors to admit, we talked about it at length. He told me that especially because of my history with Ulcerative Colitis (an autoimmune disease) and the infection that he was pretty certain my body was having a negative immune response to the foreign objects. My body was rejecting my implants. My body was sick and rundown from fighting. However there was no way to know for sure through testing, so it felt like a risky call. No one wants to have surgery for no reason, especially if it means going flat. So how certain could I be in order to make that kind of a call?
Or how desperate?
At this point more than a year had passed by. I had been looking for answers for a long time and I finally began to get comfortable with the fact that I’d have to take the chance and have my implants removed in order to feel better. Plus, I’d have to do it against the advice of pretty much all my doctors.
I was sad, because the idea of going flat chested wasn’t exciting… but I’d figure it out if it gave me my life back. So, I began the psychological process of getting ready to say goodbye to my implants. My breasts.
Somehow I managed to find a way to have a second double mastectomy.
I was preparing myself for the difficulty of adjusting to a new body. I would think about the outfits I was wearing, and took advantage of my chest while I could. I hadn’t looked normal for a long time now – but this would be particularly jarring.
Naturally, I booked a boudoir photoshoot. I found someone who had NO mutual connections, and no matter how uncomfortable or nervous I felt about it I knew I wanted the pictures. I knew I’d really appreciate being able to look back. I wanted to document the process. And it turned out to be really fun! Weird. But fun. I got some really beautiful pictures. It was an experience I highly recommend for anyone at any point in their lives.
I was ready.
My mind was made up. I knew what I had to do and now was the time. At this point it was late fall of 2021 and I booked an appointment with my surgeon the first week of January 2022. I wanted it done early in the year so I had lots of time to recover and heal before spring.
You know what happens when you make a plan? Not the plan.
Something else was happening during this fact finding and acceptance process… My symptoms and pain were getting worse. It had been progressing a little more and more ever since the summer of 2021 and now by the fall it was really having a negative effect on my everyday life.
On top of this constant flu-like achy pain every day, the upper left part of my back kept getting hurt. Any time I did any kind of exercise I’d pull a muscle – it would take weeks to feel better – and then I’d do the bare minimum exercise and I’d pull it again. Sleeping was getting difficult, I’d wince in pain every time I shifted positions while I slept. It was hard to get out of bed. Hard to lift anything. Hard to sit. Hard to sneeze… I was getting even more desperate. All I could think of was how it would all go away as soon as I had that surgery.
I just had to hang on a little longer.
I don’t know what triggered it, but during the Christmas holidays it hit me that I should have another scan. My surgeon would want it since it had been almost 8 months since that last scan where a cancer recurrence was ruled out. There was so much more pain he’d want a fresh scan, plus my oncologists always told me that if symptoms worsened then I should repeat the scan in 6 months. Huh, funny how fast time flies when you’re getting by one day at a time.
So I made the appointment.
In a different blog I wrote about what happens next and spoiler alert – they found cancer in my spine. BUT, I’ll breeze by that for now and get back to the breast implant illness.
My surgery had to be postponed because I had to go back into cancer treatment for stage 4 metastatic breast cancer.
I kept that January appointment with my surgeon.
I told him what happened. He was shocked, his eyes welled up with tears and he was speechless. I cried too. It was a moment. I told him about how I suspected BII and I wanted surgery, but now it had to wait. I was devastated because of the cancer of course, but I was also devastated that I couldn’t get my implants removed. Now more than ever I need my immune system to be working as efficiently as possible, but there was nothing I could do. He told me to come back to him anytime and he’ll do anything I need whenever I need it.
I held on to those words.
The entire year of 2022 was spent in cancer treatment and I continued counting down the days until I could lose my implants. It was also an entire year longer where I questioned myself, doubted my decision, went back and forth… My oncologist held strong opinions that BII wasn’t my problem, so it’s impossible not to question yourself when you’re being told the opposite.
Then I met a new doctor, my palliative care doctor. Being sent to the palliative care clinic is a whole other vibe – which I’ll get into another day – but I had another doctor to ask about her opinion on BII.
I’ll let you guess how that went.
Yes, chemo was awful. Radiation was horrible. Targeted treatments weren’t super fun. But these implants were next level problems. It was getting so much worse. But in all honesty it was getting hard to differentiate the causes of the many symptoms because I was on so many medications, treatments and not to mention the cancer itself.
One thing I was confident about was the fact that my immune system needed a break. It needed to be as strong as possible to do the most important job ever – fight my cancer! If there was even a 1% improvement then it was worth it to me. I just had to wait until the time was right.
And finally… On December 22, 2022 I finally had the surgery I waited years to get. I was stable, I was stronger, I wasn’t immunocompromised… It was time to rock and roll. My husband took many pictures of me in the moments before, again documenting the process for my future self, and for my kids. My name was called, one last kiss and off I went.
Laying on the table hooked up to the IV’s my surgeon grabbed my hand and gave it a comforting squeeze. So many thoughts were running through my head. Then just before I went under my eyes began to tear up with nervousness, desperate hope and immense gratitude that I was finally here.
Waking up from surgery felt awful. Even though this was surgery number 5 I forgot how painful it can be. My chest hurt, I couldn’t take a deep breath and I was emotionally overwhelmed. My husband was there waiting for me in recovery, and once I saw him and began cracking inappropriate jokes I knew my life was about to get drastically better.
I just knew.
Then came the immediate validation from my surgeon. He began to tell me how my right side was in full capsular contracture. It’s a term that basically means my body was rejecting the implant and had started to tighten, move, become misshapen and hurt the surrounding muscle tissue to the point that it was affecting my mobility and causing pain.
It was a B – I – T – C – H to remove, were his exact words.
This meant that no matter what I made the right move. Surgery is the only way to fix contractures, so it was inevitable anyways. I couldn’t help but feel the anger bubble up inside me as all of the past conversations with the many doctors started to play in my mind. How was this missed? How was this ignored for so long?
It didn’t matter. Now, I wait and see if any of my symptoms improve. The clock was on and there was nowhere to hide now. Nowhere else to look.
It didn’t take long to realize that my life had changed. In fact, my husband told me only days after surgery that I was different. He said I was getting out of bed faster immediately after a major surgery than I was before. Sure, I hurt and couldn’t move very well… but I was still in better shape and I knew it was all part of normal recovery.
I was very encouraged.
After the first week I was feeling good. Really good. Recovery was smooth and going well, I was getting more mobile and stronger every day… and I was feeling good. Did I say that? I didn’t want to jump the gun and declare ‘CURED’ yet because I knew it was early… but so far that fluey-achy feeling hadn’t returned.
Cautious optimism was the name of my game.
I was seeing my surgeon every week to make sure everything was going well. And it was. Given my history of complications and infections we played it all extra safe and took extra care with my wounds. He didn’t include drains (for fluid that tends to build up with surgeries like this) because there wouldn’t be a ton of fluid and the chances of infection increases. No risks this time. He had to remove fluid every week with a syringe needle, but it was a small price to pay.
The best part was that I got to tell him how much better I felt every week! I couldn’t believe it – every week it felt like I took a huge leap in my improvement and that sick fluey-achy feeling was still not there. I didn’t remember what it felt like – I didn’t realize how bad it had truly been until it was gone.
The fatigue, the stiffness, the pain, the malaise, the achy-fluey feeling, the rib cage pain, the tightness, the weakness… gone. Even my face looked clearer, smoother, brighter, smaller. My entire body felt like a weight had been lifted. I was talking with animation, I was walking and moving with pep in my step, I was hyper, and I was HAPPY.
Unreal.
It really hit home when I was with my kids at their NINJA gym. I have been taking them to this NINJA gym for a year and I always had to help them out or walk around or move equipment and it was always exhausting for me… I always managed to do what I had to do, but I didn’t enjoy it. I got through it and I had to sit down alot… Not this time. I was moving with the kind of energy I forgot I used to always have!
Remember Lindsy the personal trainer? The fitness coach? The exercise enthusiast? I certainly didn’t. I lost her.I lost myself. And here I was… beginning to remember how good I used to feel. I even told my husband – maybe I’ll do the Spartan Race this year!
That’s when he really knew I was feeling better. Setting unrealistic exercise goals was one of my favorite things to do! Ha.
I can confidently say that I know that I had BII. There isn’t a question in my mind. It happened to me. It’s happening to other women and they’re being told they’re fine, and they feel like they’re going crazy and they’re confused and in pain and sick and IT IS NOT OK. What I had to go through is not ok.
I have more to say on the breast implant industry as a whole, the FDA, medical gaslighting, women’s health issues, and my doctors who I genuinely believe simply didn’t know any better – but should – but I’ll have to get to that another time.
One thing I need to mention is that during the last couple of years there have been a ton of proper studies and even more properly documented medical case studies done on breast implant illness. So research is slowly but surely improving. Doctors will get what they need in order to pay better attention to what’s going on.
The FDA put a black box warning on implants too – the black box warning is their most serious label! This was a HUGE BREAK for those of us who knew they were potentially harmful medical devices. The warning says they’re not lifetime products – they’re meant to be replaced every 7-10 years. Do you know how frequent that is in the scheme of things?! Do you know how many women have had their implants for 20, and even 30+ years?!
Finally it’s super important to note that there have also been multiple types of CANCER associated with implants. Specifically the textured implants – which have been recalled world wide – but they’ve been found in all types of implants too. Saline, silicone.. and every singe shape and style. The cancers are rare, but are being found more and more. Can you imagine getting implants after breast cancer only to then get cancer from your implants?? I can. Because it’s happening. Everywhere. To people just like me.
I feel like I have an obligation to get the word out there with all of the right people, and especially anyone who feels like they might be dealing with BII too. I want to help, because if I had a little more help a little earlier on then none of this had to happen this way. The last couple of years could have been monumentally different for me.
Of course, if it wasn’t for my relentless search for answers I may not have found my cancer as quickly either. So there’s that too. Isn’t it amazing how if you look for a little bit of good in a whole lot of bad you can usually find it?
So no looking back now, just forward. Way way forward.