Roxane

This is my breast implant cancer story-- a man made cancer that should not have happened; If the manufacturer would have been truthful, if the FDA would have done their due diligence, and if the plastic surgeons(at least my plastic surgeon) would have listened to the warnings.

In  December 2012, I had a bilateral mastectomy followed by six rounds of chemotherapy to cure my breast cancer.  As a course of my breast cancer treatment, I also had Mentor Smooth Breast Implants put inside my body in October 2013. This is where my story for you begins:

As a woman, when you experience the loss of your breasts, you trust that the replacement is the same or maybe even a little better. My husband had the wherewithal to ask my surgeons about the risks of implants: Would my implant surgery be difficult? Would my cancer be gone after my mastectomies and chemo? Would the implants be safe? I just wanted to feel whole again after going through cancer and losing all of my hair. He assured me I could not get cancer from the implants and how safe they were. All I was thinking about was cancer. Breast implants were the least of my concerns. I put all my trust in him.

I had multiple surgeries to fix his sloppy work before he pushed the Allergan Textured Implants on me in April 2014. He stated these teardrop implants just came out on the market. Little did I know they had been out for years. We asked the same questions on safety and he reassured us again to do the exchange of implants.

Fast forward only four years; In 2018 my left breast swelled with fluid. Everyone says not to google symptoms: “Only the worst diagnosis will appear.” And sure enough, the same answer kept coming up, the “C” word. Again? Could I possibly have cancer?  What is BIA- ALCL?  My plastic surgeon saw me immediately. He physically examined me and thought perhaps if anything my teardrop implant may have flipped. He tried to flip it back. OUCH! The pain was excruciating and it did not move. Obviously,  he wasn’t informed textured implants can’t rotate. My doctor assured me there was no way I had BIA-ALCL. It was too rare. In fact he didn’t think anything even looked unusual.

But to ease my worries he would order an Ultrasound and an MRI which showed fluid and a seroma. I needed a fluid aspiration to test for BIA-ALCL and a drain put in. My radiologist said he had not heard of this type of testing. While I was on the hospital bed, moments before sedation for the drain to be put in we called my plastic surgeon from the radiologists cell phone as I would not go under until I knew he was informed. He asked about the names for the tests for this rare cancer, which I had to provide the information for so they could be requested.

After my drain was put in and taken out one week later, I got sicker. I suffered from full body chills. I do not know if I can describe the cold: no blanket would suffice. Then came the vomiting. Then the fevers. I do not know if I can describe the heat: my skin was on fire.

My plastic surgeon finally conceded and told me to go get a CBC. I rushed to an outpatient clinic, the receptionist took one look at me and I was taken by wheelchair to the emergency room. I was in septic shock and was categorized as critically ill.

They put seven bags of fluids in me intravenously through my neck and arm. I was rushed by an ambulance to the hospital fighting for my life. At this point,  I learned I was possibly the one: the first diagnosis for this hospital with this rare cancer. 

My plastic surgeon was called in stat to conduct an emergency surgery to remove only my left implant, the one causing “the infection”  but he also decided to take four samples of the capsule to test, against my husbands requests to remove both implants and both capsules knowing if he only sampled my capsules this cancer can spread like wildfire.  I was in intensive care for one week and in critical condition. I only learned I was positive for BIA-ALCL from a rounding physician. My plastic surgeon and my former oncologist couldn't answer my questions about this rare cancer so they didn’t see me in the hospital. My plastic surgeon went on vacation with no one to cover for him and my oncologist was even rounding on patients but couldn’t stop in my room. These are physicians that should have their licenses revoked!

Once discharged, we then drove six hours to Mayo Clinic because they had treated three other women with BIA-ALCL. Here I learned the Mayo Clinic had instructed my plastic surgeon to perform a total capsulectomy before my emergency surgery because he had learned of the positive test results prior to me going into septic shock. Here, I also confirmed that my plastic surgeon put me at risk for the cancer spreading if my capsules tested positive and he didn’t do total capsulectomies. The Mayo doctors could not believe he did not follow their recommendations when everyone knows when diagnosed with BIA-ALCL a total capsulectomy or total enbloc is the first course of treatment. One physician even questioned if this doctor had a medical license. We said well he went to Notre Dame. He said “Anyone can go to the Notre Dame bookstore and buy a sweatshirt”.

I went home and within one week I once again began to develop fluid. If you think the fear of a cancer diagnosis is bad, try wondering if you're going septic from cancerous fluid. Now seventeen days after my left side explant I was taken to surgery to remove the right implant and capsule, the left side remaining capsule, two mammary lymph nodes that lit up on my Pet Scan and a part of my ribs (the texturization really does work!). At this point, if you believe the guidelines, I am supposed to be cured of BIA-ALCL.  

The plastic surgeon told me the pathology came back negative.

Three months after surgery at my next pet scan, I had two more mammary lymph nodes needle biopsied. Test results were positive for BIA-ALCL. The rare cancer had spread. 

At this time I had a choice as my Mayo hematologist wanted me to get a 2nd opinion. I could get treated at MD Anderson who had more experience with 65 patients with this rare cancer but whose doctors recommended I wait to see if the cancer spreads after three months. Or, I could be the first BIA-ALCL patient at Mayo Clinic to have a Cryoablation on my lymph nodes for a possible cure as soon as possible. My decision was to have the Cryoablation to forgo having chemo. I was in the hospital for observation one night. It was a very painful recovery.

Two months later I developed a mass in my chest wall. Another pet scan. Mayo diagnosed it as necrotic tissue from the ablation but I was sent to MD Anderson for a biopsy of the mass and a few lymph nodes. Tests were inconclusive as not enough specimens were taken.

In another two months after yet another pet scan, new nodes appeared. (including a 4cm node on my left clavicle)This was needle biopsied and tests revealed B cells and T cells but all my oncologists told me I am in remission and that there is nothing to worry about.

We will “watch and wait three more months. I just knew I was not cured. I went into a deep depression for a short time knowing they were all wrong as family members wanted me to just move on.

At my next pet scan,  I began to question why there are certain treatment recommendations CHOP, Radiation and Brentuximab, etc. Why not just Brentuximab? Apparently I do not fit within the NCCN Guidelines for this rare cancer. My BIA-ALCL has spread.  I am stage three. I am still on the watch and wait list. I don’t understand.

November 2019 I decided to attend the 1st World Conference on BIA-ALCL to get more knowledge on my rare cancer because there are no answers. While preparing for this I could not locate my CD30 testing done at Mayo to take with me. I contacted them and was told they didn’t test for it. I was fuming. All I do is preach to get CD30 done on all capsules and hear nothing but horror stories from these women who have plastic surgeons refuse to test or say they will and don’t, and it happens to me.  Thankfully they kept capsules for two years so they were able to test them. 

At my seventh pet scan in a year came the unexpected. I feared the results. But what was worse is I feared there were no answers. It showed my cancer had spread to both right and left clavicle nodes now, mammary nodes, chest and my lungs. How can this happen when I was just told three months ago I was in remission? As I previously stated, they have no answers. 

Now, I am now stage 4 cancer and have one year to live if I do not do treatment or if the treatment doesn’t work. Talk about having your socks knocked off..Wow!  They want to start me on CHOP-E, Brentuximab and radiation. Oh and don’t worry Rox if that doesn’t work we can do a stem cell transplant. I just looked at him like are you crazy as I was not doing any of that but Brentuximab. I had just been to Rome and learned it was the first course of treatment alone so why would I put my body through that kind of hell. I pushed and pushed for it because they have no answers for us on what’s going to work at stage 4. I talked him into presenting my case to the tumor board and they agreed with me to do seven rounds of Brentuximab only. At 3 months it showed almost remission after treatment four. After 7 treatments it showed I was in remission with one spot they needed to watch. I was their miracle patient! He told me my chances of recurrence is most likely one to two years but no worries they know the Brentuximab will work. I have made it a year as of June 8th. It’s crazy I’m writing this at the year mark.

I feel very lucky to be here today. It has taken much advocacy for my own health and collaborating with oncologists, pathologists and plastic surgeons.  I am so thankful for the many friends I”ve made on this never ending journey. My willingness to stay informed on my cancer has also brought me much respect from all of my physicians as I work with them now on my care as a part of the team. I do find it therapeutic to help other recently diagnosed women find answers and provide a beacon of hope that this can be treated and possibly cured.

In my lifetime, I  have seen a new man made cancer develop because of a product they put in our bodies. They have a rare opportunity to extinguish this cancer and prevent the numbers from growing. 

I am one of approximately 1200 but I am also one of millions of women who have had textured implants put into their bodies. 

According to the FDA, over four million products are subject to the Allergan recall. Does this mean millions of women are at an increased risk for this rare albeit man-made cancer? Yes! The FDA and plastic surgeons need to put themselves in the position of these women.

Women like me who have survived breast cancer who now live in fear of developing a new type of cancer. We need them to help us women who are at risk of BIA-ALCL to understand how to proceed. 

We are getting mixed messages and even worse, we are being blamed for questioning the recommendations of doctors who (if my story is any indication) do not understand this cancer because they are not informed. I believe I questioned a little too little and too late. 

Although I am sad, angry, and have felt helpless at times, I am committed as a wife, mother, sister, Nana, Aunt and friend to not only make people aware of the risks of these implants but to have no other woman get this preventable man-made cancer. 

As we like to say “Not our daughters”

💚Roxane Vermeland