Renee Ridgeley is a writer, patient advocate and volunteer at Cancer Support Community Los Angeles.
In the fall of 2016, I was relishing the fact that I had won the cancer lottery: After the initial diagnosis of breast cancer (yes, I had to lose that lottery first), my biopsy results indicated I didn’t need chemotherapy or radiation, just surgery. One operation and I would wake up cancer-free with reconstructed breasts and be back to regular activities in a few weeks. Sign me up for the worry-free BMX! (The acronym for bilateral mastectomy even sounded cool.)
But several months later, things weren’t going as planned. I had skin necrosis from the mastectomy, a muscle torn off my sternum from the reconstruction and chronic pain; both shoulders were so frozen that I couldn’t pull up my pants or hug my kids. Between bursts of tears and rage, I repeated the only mantra that soothed me: At least I beat cancer. At least I beat cancer. . . .
Google killed my mantra. My Web searches told me what my doctors, my MRIs and my pathology reports hadn’t: My implants could cause a rare lymphoma called breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). I found risk estimates all over the place as more research came in: 1 case in 500,000, 1 in 30,000, then 1 in 3,817. Now it’s reported to be as high as 1 case in 460 for breast cancer patients with the specific “textured” implants I had: Allergan Biocell 410s (which were taken off the market in Europe, Israel, Brazil, Japan and Russia last year). I had two of them. Did that double my risk?
The surface of a textured implant has microscopic crevices that lock onto tissue and hold the implant steady. Those crevices seem to be the problem. They can irritate the scar tissue — called a capsule — that forms around foreign objects. Also, they offer hideouts for bacteria biofilm, which is bacteria living in its own waste. In some women, this creates chronic inflammation and an overzealous immune response. BIA-ALCL is a cancer of the immune system.
I remember when a surgeon first showed me the textured implant. It had an “anatomically shaped” slope that looked wonderfully similar to the breasts I was about to lose. Then she showed me a “smooth” implant. It looked like a gelatinous hamburger bun. I took a selfie with the Allergan 410s and told my friends that breast cancer wasn’t going to be so bad.
Two years and three surgeries later, I know better.
In March, women and physicians concerned about breast implant safety spoke before a panel of the Food and Drug Administration. In February, the FDA had issued a statement saying that, in 2011, it had been “the first public health agency in the world to communicate about the risks of BIA-ALCL.” But none of the women with BIA-ALCL at the FDA hearing had even heard of it before it developed around their implants. Several said they’d had to inform their doctors about BIA-ALCL after finding online Facebook groups such as ALCL in Women With Breast Implants.
Within a couple of weeks after the hearing, France and Canada began the process of banning all textured implants. Our FDA, however, says they can stay on the U.S. market, with the “hope” that “providers and patients are having “important, informed conversations about breast implants and the risk of BIA-ALCL.”
When I called the FDA for comment, a press officer directed my attention to that 2011 statement on the agency website, plus something online called MedWatch Update. As for Allergan, a representative told me the company provides surgeons an 84-page “patient labeling” document (including a page on BIA-ALCL) that a patient should receive “during her initial visit/consultation.”
I had consultations with five breast reconstruction surgeons. None mentioned BIA-ALCL or gave me the Allergan documents.
Most women with breast cancer don’t have the luxury of browsing websites looking for additional cancer risks before surgery. We’re too busy with blood tests, biopsies, MRIs, consultations, buying wigs, arranging child care and organizing the chaos before the hellfire of cancer treatment begins.
When I learned about BIA-ALCL a few months after my surgery, I wanted to cut open my chest and pop out my implants. I also wanted to punch somebody. My breast cancer had never felt “fair” or “unfair.” It just was. But what if I got a new cancer from the implant that replaced my old cancer, and my surgeons and the FDA and the implant manufacturer all knew about the risk and didn’t make it clear to me so I could make an informed decision?
I did not perform DIY surgery. Instead, I went to trauma therapy, qigong and the Cancer Support Community Los Angeles. Since then, as a volunteer patient advocate, I have sat with women having chemotherapy infusions, waited while they had radiation and supported them in appointments with surgeons. I was heartened recently to hear a surgeon at a university hospital tell a young patient who asked about textured implants, “We don’t really use those anymore because they’re linked to a lymphoma.”
Last year, after having my muscles repaired, I had my implants and scar capsules removed. I wasn’t that surprised when pathology found bacteria biofilm growing on one of my capsules. Maybe this time I’ve really won a cancer lottery.