To anybody else, my breasts probably looked totally normal. Once I stepped out of the house with a bra strapped around my chest and a shirt on, I looked like any other average-chested young woman. But when I played that scene in reverse—at home, taking off my shirt, and unstrapping my bra—I didn't like what I saw.
In his pre-op notes, my plastic surgeon wrote that my breasts showed signs of ptosis, a super un-sexy descriptor defined by the Food and Drug Administration as "breast sagging that is usually the result of normal aging, pregnancy, or weight loss." That wasn't exactly what I wanted to hear as a young woman who had never been pregnant nor experienced a drastic change in weight.
In July 2013, I received breast augmentation—the most popular cosmetic procedure in the United States every year since 2006—in the form of two textured saline implants inserted beneath my pectoral muscles. After the swelling went down, I finally loved my breasts, which the implants helped to lift and fill out. Four years later, I'm still happy with the outcome.
My decision to get breast implants was a personal one that I believed would make me more comfortable and confident in my body—and it has. But in March, the FDA issued a new warning about a cancer caused by the implants, known as breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). It's notably not a breast cancer, but a type of non-Hodgkin lymphoma in the scar tissue surrounding the implant that takes an average of eight to 10 years to develop.
It affects 1 in 30,000 women with textured breast implants in the US—low compared to the 1 in 8 women who will be diagnosed with breast cancer in her lifetime—but the risk is still there. In 2016 alone, 290,000 women in the US got breast implants, but textured implants made up only 12.7 percent of the market last year.
"The FDA says this appears to be predominantly an issue related to textured implants," says Mark Clemens, a plastic surgeon at the MD Anderson Cancer Center, where he has treated 40 BIA-ALCL-diagnosed women, more than any other center in the country. "I would argue, exclusively."
There are two types of implants: ones with a smooth surface and ones with a rougher, textured surface. Doctors think the cancer forms exclusively in women with rough implants because they offer more surface area for a biofilm, a thin layer of bacteria, to form and irritate the body, causing lymphoma in the surrounding tissue.
As of May, 359 cases have been reported to the FDA worldwide. The PROFILE registry, a joint collaboration between the FDA and the American Society of Plastic Surgeons, has received 126 reports in the US. I struggled with this. Did I voluntarily set myself up for cancer? Will my implants, which some would call vain, give me a disease that's anything but superficial? We feel invincible—"that will never happen to me"—but what if this time it does?
When she was diagnosed with BIA-ALCL, Kim Crespo also questioned her decision. "It was a horrible feeling, because immediately you start to blame yourself, like, How could I have done something like this to my body?" she says.
Crespo first noticed something was amiss in December 2015. Her left breast looked higher and felt more firm than normal. Her surgeon told her she had a capsular contracture, one of the most common breast augmentation complications, a benign pocket of fluid near the implant that causes a firming up of the breast. (It's inconvenient that BIA-ALCL looks similar. In about 80 percent of patients, it presents as an out-of-the-blue enlargement of the breast caused by a fluid buildup in as little as 48 hours.)
Her case was low-level and didn't require surgery, Crespo's surgeon told her. Thorough as Crespo is, she got a second and third opinion from other doctors who gave her the same diagnosis. Since her supposed capsular contracture posed no serious risk, Crespo scheduled surgery for the end of summer to remove the capsule.
But in May 2016, her breast swelled beyond what she could handle. "It looked engorged," she recalls. "I mean, honestly, the breast looked twice the size of the other one. I panicked." Her doctor ordered several tests, including two ultrasounds and a 3D mammogram. They showed abnormalities and lots of fluid behind her breast. Her surgeon then ordered a CD30, the only test that can detect the cancer in the fluid, and a flow cytometry, which showed a bad T-cell multiplying rapidly. In early June, all the test results confirmed her diagnosis: BIA-ALCL.
Over the next week, Crespo flew to MD Anderson Cancer Center where she was treated by Clemens and his team. "The treatment of choice is removal of the breast implant and the scar capsule around the breast implant," Clemens says. "In about 85 percent of patients, that completely gets rid of the disease with no recurrence." In most cases where the implant extraction isn't enough to clear the cancer, it's because it has been left untreated for too long, allowing it to metastasize.
That was the case for Stacey Boone, who got her breast implants in 1990. In June 2013, she came down with flu symptoms and noticed a change to one of her implants. "My breast was really swollen and hard, probably two, three times bigger than the other side, and it was hot to the touch," she says. "I shrugged it off as capsular contracture because I'd had it before [in the '90s]." She took antibiotics for flu symptoms for several months, but her health didn't improve.
Just before New Year's, Boone told her sister, an ultrasound technician, that it felt as though her implant had ruptured and the fluid was seeping up from her chest. Her sister did an ultrasound on her. "I had lumps under my arm in my lymph node," Boone says. "My sister said, 'Oh my God, Stacey, you don't have one lump, you've got four.'"
After a few misdiagnoses from other doctors, Boone's sister urged her to get another opinion. Robert Whorf of Florida Cancer Specialists finally diagnosed her with stage 4 non-Hodgkin ALCL—because her cancer had been left untreated for so long, it had spread to her lymph nodes and organs. But they didn't yet know that it was linked to her breast implants. She underwent three rounds of chemo starting in January, but her cancer kept relapsing. In July, her doctors ordered a CD30 test and found the source of her cancer.
"If this is where my cancer is coming from, we need to get them out of here," Boone recalls telling her doctors. "Take them out." She had her implants removed in July 2014 and the following February she finally got a fourth round of chemo that put her in remission long enough to get a necessary stem cell transplant. She's been in remission for two years.
Since BIA-ALCL has never been detected in a woman with smooth implants, doctors support women who want to reconstruct with smooth ones after treatment—but not all patients opt for that. "At this point, you can imagine many of these women never want to see another breast implant again," Clemens says.
I wondered why, as awareness about this disease grows, doctors still offer textured implants at all. Despite its risks, the texturing can prevent visible rippling and unwanted movement of the implant, Clemens says. It's a woman's choice which type of implant she uses, but what's important is that a conversation take place between doctor and patient explaining the risk.
Boone wants nothing to do with new implants, whether textured or smooth. "I'm too scared to have reconstruction done," she says. "I'm scared it could come back anywhere."
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In the chaotic flurry of her diagnosis and treatment, Crespo opted for new implants to be inserted after her treatment. "I was in a fog. Everything was just surreal to me," she says now, just over a year after her surgery. "I wish I never re-implanted because the fear is always going to be within me."
Crespo and Boone's stories inspired and reassured me—they survived, after all. Though their experiences differed dramatically, there's a common thread woven throughout their stories: misdiagnoses due to lack of awareness.
If Boone's doctors had known about BIA-ALCL in 2013, it's likely they could have caught her cancer early and extracted her implants before it spread to other parts of her body. The effects of awareness are immediate. "We actually saw a 10 percent jump in the number of cases to profile after the FDA update," Clemens says. "Awareness has been key."
Knowledge is power, but it can also instill fear. Being in the dark about this disease, I wasn't scared of getting cancer because I didn't know I was at risk, even if just slightly. Now, it's at least on my mind. I take comfort in the fact that BIA-ALCL is rare and quite treatable—93 percent of patients are disease-free three years after treatment. Experts aren't banning textured implants or recommending women get theirs removed if they have them, just that we recognize the symptoms and act accordingly. If you have implants but haven't noticed any changes in your breasts, there's no cause for panic.
"We have very good outcomes and information on this disease," Clemens says. "We know how to diagnose it, we know how to treat it, and cure is possible in the vast majority of patients when treated appropriately." For now, my implants are here to stay, but in the event that I notice any changes, I know what to do.
Correction 10/19/17: An earlier version of this article stated that there were 363 cases of BIA-ALCL reported to the FDA. It's been corrected to 359 cases. We regret the error.
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